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Abiola Segun-Williams

Lagos (Nigeria)

ABIOLA SEGUN-WILLIAMS

Scleroderma Stories Issue 6

abiola segun-williams 1

Please introduce yourself

My name is Abiola Segun-Williams, and I am an actress and writer based in Nigeria. I studied dramatic arts, specializing in playwriting. I have a passion for writing, and I’ve written numerous plays that have been staged. I currently live in Lagos, and I am 55 years old.

When were you first diagnosed with scleroderma?

I received my first diagnosis in 2015, but I had been experiencing symptoms for about three years prior. The symptoms were consistent during that time, but I didn’t know what to make of them. When I received the diagnosis, I remember thinking, “What is scleroderma? What does that even mean?” I had been feeling extremely fatigued, and it was a significant concern for me.

Can you describe the symptoms that led to your diagnosis?

I used to experience extreme tiredness, but I attributed it to my hectic schedule. I was constantly working, often on back-to-back projects, so I thought my fatigue was simply due to my demanding workload. I believed that rest would alleviate it, so I tried taking various vitamins and supplements to boost my energy. I was confused because, prior to this, I had always been in good health and hardly experienced any health issues, not even headaches. This was all very perplexing for me.

I decided to seek medical attention, and I remember undergoing a comprehensive test, but nothing was found. My doctor was puzzled and even questioned if I was a hypochondriac. I assured her that I wasn’t, as it made no sense for me to desire illness with my busy schedule.

After that encounter, I had to return to work on set. While en route, I felt something on my face, specifically on the left side. When I touched it, I noticed swelling. My initial instinct was to turn back and see the doctor again, but considering her previous skepticism, I decided against it. I carried on.

As time went on, my face started to tighten, and my skin became increasingly tight and changed colour. Patches started appearing all over, which was particularly distressing for me. I was genuinely concerned and scared by what was happening.

How did you feel when you were first diagnosed? What were you thinking?

I felt relieved. It was a sense of relief because, by the time of my diagnosis, I was experiencing severe fatigue. I would get tired after just a few steps. Normally, I was light on my feet and walked quickly, but suddenly my steps became heavy. Walking even a short distance left me exhausted and breathless.

When I visited the dermatology department of the Lagos State University Teaching Hospital, the dermatologist took one look at me and immediately said, “This is scleroderma.” No tests were needed to confirm it. She asked about my symptoms, and the only thing she mentioned that I didn’t have was difficulty in swallowing when eating.

Initially, I had no understanding of scleroderma. However, I am a bold and courageous person, and nothing scares me. I took this as a challenge and made up my mind to confront it head-on. My faith as a Christian is an essential aspect of my life and gives me the strength to face any situation. I began to study and research scleroderma. I immersed myself in reading about it and connecting with others who had the condition. As soon as I walked out of the doctor’s office, while I was still in the complex, I immediately googled “scleroderma.” The concept of it was scary, but I didn’t let fear overcome me. I thought to myself, “Okay, now that it has a name, there’s something we can do about it.” From that moment on, I delved into reading everything I could find about the condition.

Even while sitting in the car, I continued to absorb information about scleroderma. I sent the diagnosis to my husband and told him, “This is what the doctor said.” He was just as clueless as I was.

How much time passed between your initial symptoms and your scleroderma diagnosis?

It took about three years. The symptoms developed gradually. Being health-conscious, I knew that autoimmune conditions could be influenced by diet, lifestyle, and emotional factors. So, I was taking various supplements. I was focused on boosting my energy because I was always tired.

During those three years, I always felt the need to go on vacation. Every summer, I made sure to take a vacation with my children when they were younger. During the first three days of our trips, I would just sleep. I told them not to wake me up and that they could take care of themselves. Our go-to destination was usually Dubai from which we would connect to the UK or America.

What symptoms have you developed since your diagnosis?

After my diagnosis, I experienced persistent fatigue as a prominent symptom. I had to consult a rheumatologist and undergo comprehensive tests to confirm scleroderma because it doesn’t always show up in routine tests. They checked my ANA (antinuclear antibodies) levels to confirm the presence of scleroderma. Additionally, my ESR (erythrocyte sedimentation rate) was tested to determine the level of inflammation in my body, which was quite high.

Apart from that, my skin became significantly hardened throughout my body, except for my neck, which remained soft and wrinkly. I did have some sclerosis in my lungs, so I had to undergo infusions. I traveled to India in 2016 for IV treatment. I made a few trips in 2016, 2017 and 2018 for rituximab infusions. Those treatments were immensely helpful and put me on a medication regimen.

However, I decided to stop taking the recommended steroids once I reached five milligrams because of the side effects.

Which symptom was the hardest to deal with?

The most challenging symptom for me was the excruciating pain caused by the impact on my skin. My skin was constantly peeling and highly inflamed, which resulted in unbearable pain. It felt as if my skin was being torn by a sharp blade or knife. It felt like my skin was being stretched thin from the edges and they were putting pepper in the raw wound. That’s how I felt every single day. Yet, I would still push through and go to work because I needed to. I must say that it was by the grace of God that I managed to endure that level of pain. I had multiple doctors, in India and Nigeria, who played crucial roles in my journey.

What were some of the changes in diet and medication?

When it came to medication, I had to resort to strong injections for the pain. It was insane. However, at some point, I realized that sugar was exacerbating the inflammation and pain in my body, so I made the decision to cut out sugar from my diet. Prior to this, I hadn’t been consuming sugar directly, but I was eating carb-heavy foods that rapidly converted to sugar in the body. So I completely stopped eating certain foods, especially rice, for nearly a year.

The pain gradually subsided as I made these dietary changes. Eventually, I reintroduced rice into my meals but in very small portions, limiting myself to just one serving a week. I also avoided and eliminated bread. I indulged in high-carb foods only on special occasions, like Christmas. I steered clear of soft drinks and opted for fruits, although I also avoided the overly sweet ones that had the potential to trigger inflammation in my body.

Let me share how I achieved pain relief in January 2019. I discovered the benefits of ginger and started drinking it as hot tea, which was prepared by my cook, every morning and night. I noticed a gradual reduction in pain, improved mobility on stairs, and decreased fatigue. I continued this ginger regimen alongside a few essential supplements, excluding vitamin C due to its collagen-stimulating effects which are problematic for scleroderma. However, when the COVID-19 pandemic emerged in 2020, I reintroduced my other supplements, including vitamin C, zinc, and vitamin D3. I remained committed to ginger, which has been tremendously beneficial to my well-being.

"I had just returned from my 2nd trip to India, where I undertook my 3rd Rituximab infusion."
“I had just returned from my 2nd trip to India, where I undertook my 3rd Rituximab infusion.”

How did scleroderma affect your ability to interact with friends, family, and work?

Due to the impact on my skin, interacting with others became challenging at times. I vividly remember an incident in either 2016 or 2017 when a friend invited me to an event in Nigeria’s entertainment industry known as Nollywood. I was on my way to the event, planning to do my makeup in the car. Unfortunately, my makeup wouldn’t adhere properly and cover the patches on my face caused by scleroderma. I felt frustrated and upset, nearly on the verge of tears. So, I instructed my driver to turn back and sent a message apologizing for my absence at the event. This affected my confidence in attending public gatherings.

So, I decided – you know what, if I can’t go somewhere without makeup, then I’m not going. I completely stopped wearing makeup because it became too stressful. This was a significant change for me, considering that I am an actress, but I chose to embrace my natural appearance.

I came to terms with my new appearance and the resolve helped in my self appraisal and acceptance. My appearance didn’t stop me from going out and interacting with others. I just stopped wearing makeup to cover the spots on my face. As far as I was concerned, I was more interested in being alive than looking beautiful. Because I had been ill, it adjusted my priorities completely. I’m now more God-focused than I was before. My interest in humans is to influence and impact them for good. I also realized that time on this earth is limited, so we better make use of it while we’re here. Thankfully, I’m now in a much better place. I haven’t been in pain since 2019.

Could you please share more about how you embraced your natural appearance?

My dressing style underwent a significant transformation. Wearing makeup became a tedious task, and I eventually decided to forego it altogether. The only occasions I wear makeup now are significant events like weddings or awards nights, which I attend less frequently due to the stress involved. During the period of intense pain, I would inform people that if they wanted me to attend an event, they needed to provide advance notice. This was not only for physical preparation but also for mental readiness. I discovered that I would often find excuses to stay home.

Opening my suitcase filled with expensive dresses for a close friend’s birthday party was a stark realization. My delicate skin couldn’t bear the weight of those outfits. That became my story for a long time until my body started to heal and the pain subsided. Only then did I regain the energy and stamina to dress up. It’s amusing for people who meet me now and see my old pictures — they can hardly believe the transformation.

You know, I used to be so concerned about my appearance, always striving to look a certain way. But now, I realize that those things don’t matter as much. I’ve embraced my natural hair, which became dreadlocks during my illness when I couldn’t go to the salon. Now, I don’t feel the same pressure and social expectations. My focus is on my commitment to God. I’m passionate about influencing young people and showing them that life is more than looks. Inner beauty and impacting others positively are what truly matters to me now.

What do you consider to be the most challenging aspect of living with scleroderma?

The scariest and most difficult aspect I’ve observed among many people with scleroderma is the impact on their dental health. A lot of individuals experience tooth loss and changes in their mouth structure. Fortunately, I didn’t experience significant dental issues. Instead, my concern was my receding teeth. To address this, I now use a dental appliance while sleeping. As for my face, it has become softer compared to its previously hardened state. I did lose my frontal hair, giving me a unique appearance. However, on the bright side, my hair has grown exceptionally long, almost reaching my hips.

There may be other challenges I’ve encountered, but the most painful period was when I was extremely ill — there was a time when I was almost confined to my bed. My body was incredibly rigid, and I couldn’t stand up straight. I had to rely on my hands for support as a brace. That was an incredibly difficult phase.

What are your hobbies and interests?

I try to immerse myself in reading as much as possible. Previously, I used to watch a lot of TV, but it consumed too much of my time, so I’ve cut back on that. I enjoy sleeping. Additionally, I appreciate good company, although I’m not particularly talkative. I’m more of an introverted extrovert, if that makes sense. I enjoy my own company and cherish moments of solitude. However, I also love being with my children and relish listening to them share their thoughts and stories.

Christmas Day in 2021 with my family
Christmas Day in 2021 with my family

Have you had to make any adjustments in your life due to scleroderma?

I no longer identify myself as someone with scleroderma because I believe I have conquered the disease. However, during the period when I was affected by it, I was able to offer assistance to many others who were facing similar challenges. Unfortunately, some of them have passed away, which is truly heartbreaking. One of the things that helped me cope was getting regular massages. Initially, I would have massages four times a week, but over time, I reduced it to once a week.

I also had to make lifestyle adjustments, such as avoiding exposure to pollution and eliminating unhealthy foods like fried and overly sweet items from my diet. I used to emphasize to others, even those without autoimmune diseases, the importance of maintaining a nutritious diet.

I once met a lady from England who would visit Nigeria during the colder months in England because scleroderma and cold weather do not go well together. That’s one of the aspects I dislike about the disease. In cold temperatures, my limbs, particularly my legs and hands, become stiff and hard. Last year, I spent six weeks in Canada with my daughter, and it was quite chilly. To keep warm, I wore socks indoors, and I regularly drank hot turmeric tea. It’s crucial for individuals dealing with scleroderma to learn how to manage themselves in different climates and situations.

How did scleroderma affect your work abilities?

I used to be a part of a popular television series here in Nigeria, which has been running since 2008. However, I left the show in 2017. Scleroderma had visibly changed my face, making it hard and different in appearance. Additionally, my face was covered in pigmented spots, requiring me to wear heavy makeup. My neck and chest also experienced discoloration and were filled with spots, resembling burnt marks.

A photo from 2016, when my face was still swollen from Scleroderma.
A photo from 2016, when my face was still swollen from Scleroderma.

How did you navigate your limitations and adjust to them after being diagnosed with scleroderma?

It was a great experience to work on that show and I was retained even after my diagnosis. I stayed on for almost two years with the show, from March 2015 to March 2017 after my diagnosis. It was quite a significant period because it allowed me to manage my treatment expenses and adapt my diet accordingly. But once that opportunity ended, it became much more challenging for me to afford my treatment as before.

However, I believe in the goodness of God, and He presented me with other opportunities. As a writer, producer, and director, I would receive offers to work on projects for big companies, and the income from those projects helped me cover my medical expenses.

I am incredibly blessed with wonderful friends, although they may not be numerous in quantity. The few friends I have are truly amazing. They would come to check on me, send me food, and even help with my hospital bills. One of my friends accompanied me to India for treatment on two occasions, while my pastor generously covered the expenses for my first trip. The support I received was overwhelming, and I am truly grateful.

How did scleroderma impact your relationships?

My friends were not only supportive but also extremely helpful. Some provided financial assistance, while others simply offered their presence during difficult times. I remember moments when I couldn’t speak above a whisper due to the disease, but they would call and chat with me, even though I struggled to respond. They understood my limitations and showed tremendous empathy. One particular friend disliked texting; she preferred talking on the phone. But when I told her I couldn’t speak, she respected my situation.

My relationships remained strong and supportive throughout this journey. My mother moved in with me to provide much needed help, and my daughter, especially when she was home during the holidays, was an incredible support.

My daughter and I
My daughter and I

What helps you get through difficult times?

During my illness, I had a friend who was there for me. Sadly, she passed away in 2020. She would come to visit me even when she was scared. When she saw me in my frail state, she expressed her fear that I might die. I reassured her that I wasn’t afraid of death. God has always been my source of inspiration and courage throughout this journey. I believe that I’m alive to positively influence others and help them in their lives.

Do you have any goals and dreams for the future now?

Absolutely! I’m currently working on producing my own TV shows and series. I have a strong desire to impact my community, especially young people. I want to collaborate with other production companies to create content that can guide young individuals to live productive and meaningful lives. Additionally, my goal is to see my children fulfill their destinies as ordained by God.

What medications have you taken or introduced?

I was initially prescribed steroids, which I used for a few months. But I decided not to continue with them due to potential side effects. Currently, I take various supplements, including vitamin D3, zinc, NAC (N-acetyl cysteine) and ALA (alpha-lipoic acid) for cell repair, for my lungs, and B12, Bco for energy. I also take turmeric to maintain healthy inflammatory markers. I still drink my ginger tea at night. I eat fresh garlic and onions like three or four times a week. Additionally, I’ve undergone rituximab infusion treatments multiple times.

All of the medications and supplements I mentioned have been helpful to me. They serve different purposes, providing me with energy, supporting my digestion, and improving lung health. Overall, they contribute to my well-being and help me face each day without fatigue or discomfort. Fortunately, I haven’t experienced any side effects from the treatments I’ve undergone. However, I must mention that some treatments, like the rituximab infusion, were quite expensive.

Did you have a lot of scleroderma-related medical expenses?

Yes, the medical expenses were substantial. The cost of treatments, including the rituximab injections, was high. Due to the exchange rate, it was more feasible for me to undergo treatments in India. I received financial help from various sources, including my pastor, family, friends, and my own resources. At one point, I had to spend all the funds I had for one of my treatments. It did put a strain on our finances. However, I was grateful for the assistance I received from my pastor, my husband, and friends. We managed to navigate through those challenges together.

Do you have any financial worries for the future?

Financial worries are something that almost everyone experiences, except for the extremely wealthy. Personally, I have had and still have financial concerns. I always need to buy supplements, which have been essential for my well-being and have been quite costly. Recently, when a friend was traveling, I asked her to help me get some of my supplements, which she did.

I am grateful for her help. Whenever I travel myself, I make sure to stock up on supplements. It can be quite expensive, but I can’t deny their importance in my life.

Are you in online communities?

I used to be part of a scleroderma community on Facebook. However, I found it to be quite depressing, as I would often come across stories of people suffering and even dying. It began to weigh heavily on me, so I reduced my participation and stopped actively engaging. The experiences and beliefs about medications differ greatly, as some people have taken medications with severe side effects that have impacted their overall well-being. For me, it has been more about making lifestyle adjustments. Most importantly, I’ve relied on my faith in God, which has been a tremendous source of support and provision in my life.

What lessons or skills have you learned?

One significant lesson I’ve learned is the importance of spiritual connection. Looking back, I sometimes wonder if I had been more attentive to my spiritual well-being and exercised greater discernment, I could have avoided some aspects of my illness. However, I firmly believe that everything happens for a reason and that God allowed me to go through scleroderma to not only empathize with others facing pain, loss, and disease but also to provide support and strength to them.

While I’m still learning and growing in many areas, one skill I had to acquire was patience. Dealing with chronic illness and being in constant pain taught me to be patient with myself and with others. There were times when I felt frustrated and helpless due to the physical limitations imposed by my condition. However, I gradually learned the value of patience and the importance of practicing it, especially when there is little I can do to change the circumstances.

My son and I
My son and I

What advice would you give to people with scleroderma or other chronic illnesses?

My number one advice would be to develop a close relationship with God, as He is the ultimate source of inner strength. When you’re ill, you need a tremendous amount of strength, and it won’t come from external sources. It resides within you. Cultivating a strong connection with God, knowing His word, and confessing His promises can have a profound impact on your life.

Secondly, I would suggest making lifestyle adjustments, regardless of the specific disease. Eliminating or reducing sugar intake, as it is a major contributor to inflammation, is crucial. Rice and bread are also not beneficial for the body, so it’s important to limit their consumption. I understand that dietary options may seem limited, but your health should take priority over temporary satisfaction. Self-control is vital when it comes to making these dietary changes. I also encourage fasting as it can benefit the body in various ways. Practicing moderation in all aspects of life is essential.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

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ALSO IN THIS ISSUE…

Yogita Sharma

Yogita Sharma

Delhi (India)

YOGITA SHARMA

Scleroderma Stories Issue 5

Yogita Sharma 1

Please introduce yourself

My name is Yogita Sharma. I’m from Haridwar, India, and I’m living in Delhi right now. I’m currently working as an Associate Consultant in Ernst and Young in the Healthcare Sector. 

I’ve been diagnosed with systemic sclerosis since 2016. I live with my family: three siblings and my parents, two of my elder sisters are married.

I like reading books – novels mostly. I’m pretty much a bookworm. I can read books anywhere! If I get time during work or on the commute back home, I just read books. I also enjoy puzzles like Sudoku and listening to music. And by far my favorite pastime is sleeping. That’s all I have time for these days.

When were you first diagnosed with scleroderma?

I was around 18 at the time. I’d actually dealt with a tuberculosis infection back in 2014, which managed to clear out after 8 months of treatment. But it came back with a vengeance a couple of years later along with systemic sclerosis this time. It started with just Raynaud’s and a few salt and pepper pigmentation patches along with thickening on my hands. 

Systemic sclerosis was not the major problem back then. It was the TB in my case. It was multi-drug resistant, which made the treatment quite troublesome. My doctors didn’t start the treatment for systemic sclerosis at that time because I’d be immunosuppressed, which is pretty dangerous if you’re fighting such a severe infection like I was. 

So, I ended up starting the treatment a full year after the initial diagnosis, and by then the damage was pretty extensive. 

What was your reaction to your diagnosis?

I was really optimistic actually. When I heard the news, I thought it wouldn’t be too hard to deal with. I figured that if I’d dealt with Tuberculosis twice, I could definitely handle anything else thrown at me. 

I used to think “It doesn’t matter if there’s no definitive cure. People live with chronic conditions like diabetes everywhere. So can I.” I guess it’s also because I’d never heard of scleroderma before my diagnosis. I tried looking it up online and pieced together that it’s an autoimmune condition with no cure, but what it does exactly was lost on me. 

In my experience, a lot of doctors only really know about it on a surface level. Most of what I know now comes from a lot of googling. After a while, the progression and the reality of the disease hit me hard.

As an 18-year-old, how did the diagnosis impact you?

I had to make big changes to my career plans and future. I was preparing to pursue medicine around the time I was diagnosed and did really well in the entrance exam. My worsening condition and frequent hospital visits pretty much put an end to that plan. The medical bills didn’t help either. That was a big one for me. 

I used to be very confident, but this disease has made me a bit less confident and much more self-conscious. And it is some damage which I might not see going away with time. I may gain more confidence with time, but it seems that self-consciousness is something I will have to live with.

A photo of Yogita from before scleroderma – "I believe in always moving forward, no matter how many obstacles or challenges you encounter along the way. "
A photo of Yogita from before scleroderma – “I believe in always moving forward, no matter how many obstacles or challenges you encounter along the way. “

What symptoms have you faced, and how have they affected you?

I have almost all the manifestations of systemic sclerosis – the CREST syndrome, as they called it. The more externally visible the symptoms became, the more it really started to take a toll on me. After a while, you start to really see the difference between the way you used to be and the way you are now. That’s what affected me the most. 

I have reflux issues. I take antacids to help with that. Antacids are my life right now. I can’t live without them. The reflux is very painful in my case, so I tend not to delay taking antacids.

Almost every part of my body has become covered in pigmentation. The patches aren’t very stable though, coming and going quite often. But it’s still there, and sun exposure causes it to flare up. I’m really paranoid about others seeing my pigmentation. 

Whenever I meet a client at my job, I always have this feeling that they might be staring at my forehead, thinking “What’s up with those patches?” I also move my hands a lot when I talk, so I feel like I call more attention to my stiff fingers or the ulcers on them when I’m explaining something or just reaching out to shake their hand. I don’t wear anything that doesn’t have high necks or collars, and I make sure they’re full sleeved as well. I really love wearing dresses, but again, I feel like I won’t look good in them. It’s very difficult for me to gain weight as well. 

Skin thickening is another one. Before, I had fuller lips. In scleroderma, the skin gets tighter there and makes them look pretty thin and narrow. I’d get a lot of comments about all those things appearing on my face.

Because of Raynaud’s, I get ulcers on my fingers and toes mostly. It gets pretty bad during winters. The healing process also tends to take a while – like two whole weeks. I do a lot of my work on laptops, so it can be really difficult to work at times. The toe ulcers make it painful to walk around. I get ulcers on my heels, which are even more painful. Walking barefoot isn’t an option, even in my own house. I need to make sure I always have slippers on.

Calcinosis is also one of the symptoms. Breathless at times because of lung involvement. Fatigue. These are some of the major symptoms I have dealt with.

I’ve been dealing with all these symptoms for years at this point, so I’ve learned not to let it bother me too much. And as for my medicines, I take them so often they’re like eating toffees!

Have any symptoms improved over time?

Thankfully, yes. I used to have pretty bad calcinosis in the first year. It started with the elbows. I was barely able to move them. My hand was stiff, making it difficult to feed myself. I was totally dependent on my family for my daily activities. 

For the future, I’m most concerned about what’s going on inside me. The internal organs tend to get involved in scleroderma too. I mean, my lungs are already involved. Not majorly, but I got diagnosed with ILD (Interstitial Lung Disease) two years ago. I just get really scared about it progressing or affecting other parts of my body, so I keep getting it checked often.

Then, there’s the thing about my hands and fingers. Back in 2019, I started seeing changes in the first joint of my index finger. It was basically bent and stuck that way. I underwent surgery and got it straightened out. Overall, my joints are still ok. 

I try to work and exercise with my hands as much as I can, just to make sure I keep my mobility. If you look at my hands, some of my fingers are bent in places. I need to make sure they don’t lock up in a way that bothers me.

In general, I have figured out how to manage my symptoms mostly because I have gotten accustomed to what works for my body and what doesn’t. After a while, you know each and everything about your body… how it’s reacting, how it’s not reacting to particular things. And if I see that it’s not reacting the way it should be, I consult my doctor.

Could you please tell us about your treatments?

I started receiving treatment for the condition an entire year after I was first diagnosed. I started with pulse therapy for fourteen months, dexamethasone they used in the pulse therapy worked wonders and kept it from impacting my mobility. Later on, I was on this drug called mycophenolate mofetil for around two years. I also took Depin Retard for Raynaud’s and all. Currently I am on Mycophenolate Sodium. I switched from MMF to MMS due to increasing reflux issues. My doctors are planning to switch me over to cyclophosphamide or rituximab… we’ll see what they decide.

I won’t say that medicine didn’t work for me, but after a while the side effects started to really bother me. For example, the meds I took for Raynaud’s started giving me headaches. I suffer from migraines sometimes, so I had to be taken off of it. 

Where have you found support in difficult times?

The important people in my life don’t mind at all. My family is my backbone. They’ve been an incredible support throughout my journey. They never made me feel like I was different or that anything was wrong with me. 

Take my forehead, for instance. I’m well aware that there’s pigmentation there and the skin is sort of tight. But they’ll say that it isn’t too different from before, and that I still look great. It’s the little things I guess. There are some friends who witnessed my journey, and they have seen me throughout and said that they took me as an inspiration. I have also got support from the NGO too.

Do you face any challenges working as an associate consultant with scleroderma? 

I haven’t had too many issues at work. For instance, back in February, Raynaud’s affected one of my fingers, and I was in the hospital for an infusion for three days. My manager was pretty understanding about the whole thing. I have some coworkers/good friends at work too who make me feel comfortable and help me to overcome my introvert side.

On the other hand, there are people I’ve encountered that are really bad. I get a lot of “What happened to your face?” or “ Why do you look so thin?” I tend to cover up to make sure I don’t give people a chance to say these things.  I’ve gotten used to these unwanted comments. Don’t get me wrong, it still affects me but after a while you just realize that you have gone through much worse things in life than all these pitiful things people throw at you. I also believe in counting my blessings.

"My source of strength, Inspiration on my journey. Thanks to my family for unyielding support. If it weren't for them, I don't think I would be where I am today."
“My source of strength, Inspiration on my journey. Thanks to my family for unyielding support. If it weren’t for them, I don’t think I would be where I am today.”

Has scleroderma impacted your financial stability?

It’s definitely affected me quite a bit. There is a sizable chunk of my monthly budget that goes straight into my medications. Sometimes, I’ll need to get tests done… CT scans and x-rays and all that.

Unfortunately, no insurance coverage for the disease exists here, which means it has to come from my own pocket. Earlier, it was handled by my family. But now that I’m working, I make sure not to ask them for financial help. I do it on my own. It has been fine up to now. It was pretty expensive for me in the beginning. I just hope it gets covered under some insurance in the future at least. 

What are your dreams for the future?

I want to do the job I’m doing for the next 10 years maybe, but after that, I really want to spread awareness about scleroderma. I haven’t met people who already knew about it. I literally made the Instagram page we were talking on (@mylifewithscleroderma) in the hope of finding and interacting with people who are having the same condition as me. 

Then I got to know about Scleroderma India. It’s an NGO run by Rashmi Bhasin and founder is the late Neetu Wadhwa. So I got in touch with them. There are a lot of people who have scleroderma in that group. Then, I got in touch with other people from Scleroderma Canada and then Scleroderma UK. I want to be connected with organizations from different countries. I’d love to contribute not just in spreading awareness but in consultation, and other possible ways as well, because I know for a fact it becomes difficult to live with especially when it comes to mental health. 

Frankly speaking, there are days when I feel like that too… that I’m not able to live with it. So, I want to reach a level where I’ll be able to provide to people who have scleroderma regardless of where they’re from, who they are.

What life lessons have you learnt over time?

The motto of my life is “count my blessings” and continue living. I try to convey this to others as well. After hearing about other people’s journeys and stories, I realized that so many others have it way worse than me. I thank God for being able to look after myself. 

I’ve been able to work a normal nine-to-five job, with a smile on my face or with a headache. That’s ok, it’s just life. I feel like no matter who you are or how rough you have it, if you’re able to walk, talk and look after yourself, you should consider yourself lucky.

I also learned that I’m better off living my life to the fullest rather than limiting myself. When the symptoms started to get really noticeable, I thought “I won’t be able to go out and meet my friends.” And whenever I gathered the courage to step out of my house, I’d get awkward looks and comments about my appearance. 

If I had to give a lesson to my past self, it’d be to go out, learn new things, experience everything and have fun because life is short, you don’t know what will happen to you the next day or In my case now what new symptom i may experience tomorrow. I want to go out, I want to go on trips, I want to have fun. I didn’t think I’d love to travel this much, but I’ve been visiting different cities recently, and it’s a lot of fun. I want to enjoy each and every phase of life with my family. 

I’ve learnt to come out of my shell a lot more as well. I consider myself an introvert. I still feel like I’m not able to fully express myself like I should, but I’m definitely getting much better at it. 

Any advice to others dealing with scleroderma or any other chronic illnesses?

Gain knowledge. Learn each and everything about the disease. But don’t attribute each and everything to the disease. Not every ailment is necessarily a part of it. 

And in scleroderma, our body is very restricted, so exercise daily. If you are not able to get up, do it on your bed, but do it for 10-15 mins daily. Meditate, read books for your mental peace. Do deep-breathing exercises. Also don’t make your life revolve around your disease. There are much bigger problems in the world. We might get it much worse than we could expect.

There are days when I cry my heart out and was not able to figure out things. If you feel the same, seek help. Communicating helps – I am bad at expressing myself, but communication helps.

I’m still making my way out. I used to think that everything revolved around my disease. If I’m not going out, I used to say it’s because of the disease. No. I’m staying in because I don’t want to go out because of my self-consciousness. 

I feel like others dealing with this shouldn’t restrict themselves either. Go anywhere and do whatever you want to the best of their ability. Don’t mind what others say about you. People tend to say bad things on your face that they might not even remember, but don’t focus on them. You know your journey better than anyone else. There are a lot of things you’re capable of. Believe in counting your blessings.

There’ll be days you’ll feel too down to do anything. Don’t do anything. If you’re so frustrated and tired that you want to just lie down and do nothing but sleep, go for it. Sleep the entire day if you want. But pick yourself up by the next day, and move forward with a fresh mind and spirit. Rather than feeling sorry for yourself, go out and do it before it’s too late.

"From overcoming anxiety to achieving my masters, navigating the highs and lows of life has been a journey. Balancing work in a hospital while receiving treatment, to proudly earning my first job's award, I've witnessed it all. Through it all, I choose to count my blessings and embrace gratitude."
“From overcoming anxiety to achieving my masters, navigating the highs and lows of life has been a journey. Balancing work in a hospital while receiving treatment, to proudly earning my first job’s award, I’ve witnessed it all. Through it all, I choose to count my blessings and embrace gratitude.”

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Tom Fry

Tom Fry

, , ,

King of Prussia, Pennsylvania (United States)

THOMAS FRY

Scleroderma Stories Issue 5

Tom Fry 1

Please introduce yourself

My name is Thomas Fry, I was born and raised in Potsdown, Pennsylvania. I was diagnosed with scleroderma on October 3rd, 2020 in South Jersey, and I am now living in King of Prussia, Pennsylvania.

Could you please tell us about your journey with scleroderma, from initial symptoms to now?

Ironically enough, the gym is actually how I knew there was something wrong. Towards the end of 2019, I noticed my hands were getting really stiff and swollen, and my grip strength was going away. When I was lifting, I felt that something was not right. My feet started to get really swollen, and then my knees became quite stiff. 

The whole situation was just really crazy to me because I was always a very physically active person. Seeing my body reacting like that, I knew something was wrong. My now ex-wife, my wife at the time, was a registered nurse, and she encouraged me to go get my symptoms checked out by a doctor. 

I had probably two or three years’ worth of appointments in about only six months, had almost 15 different blood tests for various different conditions, and got prescribed the all the wrong medications as I was misdiagnosed with different types of rheumatoid or psoriatic arthritis – or even a combination of the two. I was given methotrexate and steroids as a sort of Hail Mary.

For the final test, the doctor told me that if this comes back negative, which it almost always does, go somewhere else. A few days later, I got a phone call. It turns out I was actually positive for the Scl-70 antibody, meaning that I had systemic scleroderma. 

Ultimately, I had to switch doctors either way, and now I have a doctor who is actually the head of Penn’s Rheumatology Department (Dr. Peter Merkel), who specializes in scleroderma. He actually saved my life, because I almost died of renal failure literally a month later, on November 3rd. As it turns out, methotrexate and steroids can greatly complicate the condition of scleroderma. Knowing of that negligence to prescribe me those drugs without even considering that it could have negatively impacted me if I had scleroderma – it was shocking.

I was at Penn for four and a half days because I was at the precipice of complete renal crisis. Every day, there was at least one, if not two doctors, residents, or fellows observing me and asking me questions. 

The coolest person that came was actually on her last round of clinicals. She did the skin score and was checking stuff out, because I have raised scale-like marks in certain parts, which she was looking at. We were just talking when she asked, “Is it okay if I tell my professor about you?” I said that she could, but asked why, to which she said that in medical school they’re taught that if scleroderma ever comes up on a test, it’s never you; the test almost never comes back as showing the diffuse cutaneous form that I have. I realized that was why they missed it for so long and took so much time to diagnose me correctly – it’s something they need to change.

After that, I had my blood pressure checked twice a day for almost a year straight, went through hypertensive shock seven times from January 2022 til the end of April 2022, and woke up blind a few times until my blood pressure normalized — almost died a few times there. They thought it was Addison’s because of the kidneys, but part of it was actually from the stress of going through a divorce. My body couldn’t keep up, and my hormone levels were fluctuating significantly. I would just literally eat straight salt and just chug water until my blood pressure would come up. It was crazy.

Now, I’ve improved a lot. I went from taking 33 pills a day down to four. Considering I have the terminal kind of scleroderma, the doctors don’t really know how I’m doing so well. Obviously, it’s a blessing because my lungs, heart, kidneys, hands, feet are all affected.  

Despite that, I went from barely being able to barely get off the floor last April to going to the gym every day once again. They have no idea how it’s possible. They’ve said, “Hey, whatever you’re doing, just don’t stop.”

Tom Fry 2

Can you pinpoint anything as the reason for this progress?

So it sounds petty, but my doctor did tell me this — we used to get into arguments in his office, because I was clearly frustrated since I changed from a very athletic, very strong man to barely being able to get up off the floor in a very short amount of time. I was just hurting all the time, but he kept telling me, “You’re feeling stuff that you shouldn’t be feeling for what I’m seeing.” 

Of course, then we’d start going at it because I knew what I was feeling. Yet, the first time I was in his office after the divorce, he looked me and said, “Oh, you look like you’re doing better.” I was, and I’d even been able to start working out again. He asked me, “Who’s not in the room?”

So it sounds petty, but my doctor did tell me this — we used to get into arguments in his office, because I was clearly frustrated since I changed from a very athletic, very strong man to barely being able to get up off the floor in a very short amount of time. I was just hurting all the time, but he kept telling me, “You’re feeling stuff that you shouldn’t be feeling for what I’m seeing.” 

Of course, then we’d start going at it because I knew what I was feeling. Yet, the first time I was in his office after the divorce, he looked me and said, “Oh, you look like you’re doing better.” I was, and I’d even been able to start working out again. He asked me, “Who’s not in the room?”

When you were first diagnosed, were you aware of the disease?

During the first six months of non-stop testing, I was reading up on every possible condition. Scleroderma had popped up, but I quickly dismissed it. It was an outlier, and I thought that, if it was this crazy, then surely they would have thought of it already. In reality, it was because it was an outlier that it took so long to diagnose. It was not on their radar at all.

I was quite upset when I was eventually diagnosed correctly, because it meant that so many of my symptoms were overlooked and many key things were missed. The synovium in most of my finger joints had overgrown. It was covering all my bones. When I told my current doctor, he said, “They should have known you had scleroderma from day one.”

The doctor I was seeing first has won awards. He headlines events, and his practitioner gets published all the time – he was not a slouchy doctor, but he just blatantly missed it. I know that it happens and no one’s perfect, but my current doctor said that I should have been diagnosed within the first two visits. Then, I remembered how my first doctor said that the final test he ran would just come back negative and that I should go somewhere else. We got in a really bad argument in his office that day; he essentially had given up on me. 

Honestly, in a weird way it’s been a blessing too. It was two and a half years of barely being able to move. I had to completely rewire my brain. I was no longer the strongest guy in the room. There were so many things that I couldn’t do. How was I supposed to get by in a life where I couldn’t move? What kind of husband would I be? All these thoughts were creeping in, and the divorce following that also didn’t help. 

I had to make the mental choice to either let this kill me or to get better. I had to get real good at adapting, and I actually became a stronger person for it, growing in my faith, mental health, spirituality… I became the best version of myself in the worst time of my life. Then, I got some of my strength back, so now I’m just a better person overall.

Tom Fry 5

What are some of the personal strategies you have used to improve your mental health?

Most of my mental health actually came through my faith. It was a struggle that I’ve always had because as a physically strong person, you can force your way in many situations in life, which is something that’s praised when you’re a guy. 

I had some pride in me for sure. Scleroderma was a really bad kick to the ego, and it humbled me really fast. I just got really grounded. It forced me to sit back and think, “Alright God, what’s going on? What do I need to do? What are we doing?” Through a lot of self work, Christian workbooks, and doing little bits and pieces even if it’s only once a week, I’m still doing something to always keep me grounded and to not blow the blessing that I received by regaining my strength.

How have you been involved in spreading awareness about scleroderma?

My friends and I were a part of an online movement that garnered considerable attention, where a lot of people were able to hear what I had to say. I actually became Twitter friends with the comedian, Bob Saget, because scleroderma took his sister in the 90’s. I reached out to him and somehow he saw it. We used to tweet back and forth, which caught some attention. It was through him that I was able to talk to other comedians and big names and was able to use some other people’s platforms to spread awareness about this disease. 

I’ve been invited on the Golden Hour podcast three times, which garnered attention as well. I was able to talk about scleroderma very publicly, using dark humor to make light of a really tough situation. It’s really cool to see people with these platforms change in real-time when something like this knocks on their door.

I was also introduced to Amy Gietzen, who had me join in on a bunch of panels that they put on YouTube. I was a part of the national conference in 2021, the end of year donation campaign in 2021, helped Amy with the Steffens Foundation two months ago, and various other forms of advocacy. 

My experience also allowed me to help people on a more personal level, such as my friend’s wife who was recently diagnosed with scleroderma. I’m just open with everyone in my life about my story and what I’ve been through.

How has it been interacting with scleroderma warriors or the public on the receiving end of these platforms?

They’re highly empathetic, but then again, I don’t think we have a choice. Every so often, I get a message on social media asking how I handle it… how I seem so carefree all the time. 

I have noticed that the scleroderma community really appreciates the advocacy work even if they don’t speak on it. They see the posts, and every now and then, people will reach out and I’ll get these really cool messages. I just wish more people would realize that they have a voice.

One thing that bothers me the most, and I know it bothers other people I’ve talked to — not even just with scleroderma but generally speaking and especially with autoimmune diseases — is that people hear the word “terminal” and they ask, “Oh, what cancer do you have?” Well, there’s more that can kill you than cancer. Sometimes, they just assume it’s cancer without even asking. Another thing is when someone says, “Oh, it’s okay. Everyone’s going to die one day.” No, that’s not how this works. I know that they’re trying to be nice, and they’re trying to relate to something that they have no grasp on. Me being me, I actually did the math on it. Someone in my shoes has a 12,000 percent higher chance of dying every day compared to a regular person. It is not the same, and people don’t know that because they’re not in it. 

I’m actually writing three different books right now about scleroderma — a kids’ book, a companion book, and my own story — and there is an entire chapter dedicated to this topic. 

I also feel that outward appearances and the way that people like me are treated is weird. Most of my symptoms are internal, so people may not see what I’m going through. They might just see me limp. People look at me and go, “Oh, but you’re a strong man, why are you limping?” You get judged harshly for not being able to carry out certain tasks because people can’t see what’s going on internally. Same for women. 

Just because you don’t look elderly or like the kids in fundraising commercials, everyone thinks that you’re okay. It’s interesting for people who have this hidden variant. That’s something I want to fight for and address on a personal level.

Tom Fry 3

How has your support system been through your journey?

At first, the support system was almost non-existent. It really didn’t grow until last July, when I moved back to Pennsylvania from Jersey. I didn’t have a lot of people in Jersey because a lot of my friends live in other places, and then I went through a divorce, so I was alone most of the time. 

When I moved back to Pennsylvania, everyone I knew was excited to hang out and reconnect. Within a month or two, all my old relationships were back, and my friends were helping me with whatever I needed, like moving to a bigger house. Since they used to work out with me when I was growing up and saw me at my peak, they’re highly aware of what my limitations are now. So, if they see me doing too much, it’s “Sit down. Shut up. What do you need?” I have a whole bunch of support now.

In terms of my family, my family members are pretty estranged from each other. I talk to my mom occasionally, but she hasn’t been very supportive. My dad does try to be supportive and he’s become a better person over the years, but for the most part the family support isn’t really there. It kind of just makes them sad. 

Could talk about your life now — what you do for a living and what are your hobbies?

I help run a small ball bearing company — working in sales, customer service, helping with the website, and doing promotional work. It has been interesting, to say the least.

In terms of hobbies, sports — I don’t play them anymore obviously, but I am a fan of the Philly 76ers. I like working out and playing video games when my hands aren’t killing me. Cooking is one of my hobbies which also has become harder, but I cook a lot when it’s possible. I’d say I’m a huge nerd. I’m into comic books, anime, and manga, which I’m leaning into more and more since I can’t be as physically active. I’m leaning back into the things I used to enjoy when I was a kid.

How have your work and hobbies changed and how have you maintained involvement?

I do a lot of typing for work, like most people do. I take little breaks and do hand exercises, stretches, or traction to give my hands a break. Overall, there’s just a lot of hand care throughout the day. I soak my hands in cold water when I start getting real hot and heated.

I get a bit of movement in as much as I can. Now that my feet have been getting worse, I haven’t been moving as much, which makes me kind of sad. I like to stretch as much as I can, which just helps with everything because I get so tight and stiff. Actually, I have a friend who is a really good yogi. She gave me some tips a long time ago, so I do some of her suggestions. I do chair yoga, which is kind of embarrassing for a guy, I know.

I love going out into Philly. It’s my favorite city. But the consequence of that is a lot of pain. Sometimes, you just have to grit and bear it and know that you are going to hurt. I might hurt for three days, but I am going to go, and I am going to have fun doing it. I know the price I have to pay for pushing my limits, but if I don’t risk it, I would sit on the couch all day, and that’s not my thing. I’m not going to have my friends just come sit on my couch. I’ll rest a day or two ahead of time, hydrate and stretch, and then I’ll go out and have fun. I try to stay as physically active as possible so I don’t get stiff.

Tom Fry 4

What advice do you have for scleroderma patients or anyone with a chronic illness?

You are going to feel alone and, physically, there may not be anyone near you who has your condition – but there is somebody around. You might not know them personally, but we’re not as alone as we think. Because there’s a stigma surrounding these kinds of illnesses, people don’t talk about it. As uncomfortable as it is, it is important to let the people around you know. Everybody that you become acquaintances with, your friends, your family, people at work — let them know what your limitations are. 

Some people will go away. Some people will leave your life because you’re not who they need you to be anymore, but don’t let the idea of  “we are rare, no one else is around” get you down. It’s not true. There are people you can reach out to when you need to. We’re out there, and we all have different ways of coping. It takes a village for it. You can’t be so self-reliant. At this stage of the game, that can literally be a killer. When I was trying to do everything on my own, I was not doing the right things because I didn’t know better, and I pushed myself too hard. It comes down to a matter of human pride. We all want to feel like we’ve got it under control. No one on the systemic side of scleroderma has beaten it, so statistically it is going to get you. But that doesn’t have to stop you, and you need others to help you make that happen.

That’s what I did. I went straight into the cause. I was not stopping. It makes you feel better to have that cause. I have people who ask me why I do it, because it’s not easy to be like, “I’m Tom. I’m dying.” It’s not fun. 

But there is this vision that one day, enough of us over a period of time will affect something that will help those after. We may not have that one grand slam of a person that changes the medical game with scleroderma. It might take hundreds and thousands of us to spread that awareness, but if nobody does it, nothing changes. Even if it doesn’t help me personally, I would rather try to make a change for those that come after. 

I really admire Cosette Wu for starting Scleroderma United, because scleroderma took someone from her family and although she doesn’t have it, she — as a high schooler — thought she was going to change this. So my last message is actually for those who don’t have this disease. Don’t be afraid to approach those you know that do have it. From a group, reach out and see what you can do. It doesn’t take that much, it’s just that people are afraid to do it.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Tameka Nelson

Tameka Nelson

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New York City, New York (United States)

TAMEKA NELSON

Scleroderma Stories Issue 5

Tameka Nelson 1

Please introduce yourself

My name is Tameka Nelson. I am 49 years old. My birthday is March 17th – St. Patrick’s Day. I’m a pisces. I have three children: Brian (who is 28), Tyler (who is 20), and Noah (who is 15). I have two grandchildren, Storm (age 9)  and Harmony (age 6)

I’m a guidance counselor at a school in New York, in the Bronx. I enjoy dancing, having fun, and spending time with family and friends

What led to your diagnosis?

I was diagnosed in 2012. I was having trouble breathing, and I thought I had bronchitis, which I’d had in the past. I thought it was my bronchitis resurfacing. When I was lying down and turned to my right side, I was gasping for air. I was coughing and coughing, and I couldn’t stop. So, I went to the doctor. I was out of work for about three or four days.

The doctor checked my lung capacity and all that stuff. She said, “Well, it’s your bronchitis. I’m going to give you Albuterol. I need you to take it, and then you’ll come back for a follow up.” I got the Albuterol prescription and started taking Albuterol. Normally, you would see a difference pretty much immediately, but I wasn’t seeing any change in my breathing or in my coughing. When I would go to sleep, it was still the same thing. 

As the days went on, I noticed that my ankles started to swell up. I went back to work because I was feeling a little bit better. I went to my supervisor at the time and was like look at this! I was laughing about my swollen ankles because I didn’t really think it was a serious thing. She said, “No, sweetie, that’s a serious concern. You need to go back to the doctor.” I said I’d go later. She was like, “No, you need to leave, like, right now.”

So I went back to the doctor. They ran an ANA test (Antinuclear Antibody Test) on me, and it came back positive. They then referred me to a rheumatologist. In the next day or two, I went to the rheumatologist; he immediately said, “Tell me about your symptoms,” which I did: difficulty breathing, swelling of the ankles, tingling sensations in my fingers, and some other information. And he said, “Okay.”  

He took a microscope, looked at my fingertips, and immediately diagnosed me with scleroderma. I had no idea what it was. It was my first time ever hearing of it.

Tameka dancing at her first Scleroderma Awareness Concert for a Cure
Tameka dancing at her first Scleroderma Awareness Concert for a Cure

What was your thought process when you first heard the word scleroderma?

Like 90% of people, I asked the questions, “Will I die? Is it a deadly disease? How do I go from here with my process in trying to get some help?” The rheumatologist said, “Well, any disease can cause death if you don’t take care of yourself.” That was the best answer I could get. From that point on, we built a great relationship, the doctor and I. And I’ve been taking care of myself for the most part ever since.

How did you develop your “it coulda been worse” mindset?

When I first was diagnosed, between one and three years, I was very depressed. I didn’t know what this illness would do to me. I didn’t research it because I was avoiding what I may see or learn about it. Sometimes, I feel you feed the mind information you’re not ready for, and it triggers things to become worse. That’s my way of thinking. 

My thought process was: Wow! Who’s going to take care of my children? How can I tell my children this diagnosis may change our lifestyle – that there might be some life changes ahead of us? I laid in bed for days and probably weeks, really, really nervous and worried about the outcomes. 

One day, I got a phone call from a friend of mine who said to me, “Listen. What’s going on?” I expressed what the diagnosis was and a little bit about what I knew about it. They said to me, “Listen. It could be worse.” And I took to that. 

I was like, “You know what, I didn’t think of it like that.” I started to research a little bit more about it right then and there. I started researching more about the diagnosis, more about the illness, more about the different types of illnesses. I have the diffuse diagnosis, which is the one that targets the organs. 

I thought, let me see if there’s a walk – and I found it. They have a walk to celebrate those who have been affected by the disease and honor those who we’ve lost. I started to look at how the diagnosis targets our bodies. It made me very nervous. But I was ready based on that statement – or I thought I was ready. “Let me go and do this walk,” I decided. I learned about the walk, and I did it. 

I saw people for the first time whose skin may have been different from the normal, or whose limbs may have been different from the normal. That shocked me. It caught me off guard, and I cried. I couldn’t process what was actually happening. I just prayed to God and said “I hope that’s not me. I hope that’s not me.” 

I saw someone who had an oxygen tank, with the tubes in her nose and everything. She had just received surgery. She said to me, “Who are you here for?” I said, “I’m here for myself.” She said, “Wow! How do we get to look like that?” And I felt very guilty. Like, how am I supposed to look? Now all these things were going through my head – “how am I supposed to look?” I started to look around and see other people with very tight skin, very thin lips, loss of their limbs; and all these things were now triggering me. I stuck it through. But after that, I went into a deeper depression, knowing that there was a possibility that this could happen to me.

From that point, I said, “What can I do to make myself better?” I never missed a doctor’s appointment. Never. If I did miss an appointment, for whatever reason it might be (if I couldn’t get out of bed one day or whatever), I made sure that I visited the doctor in that same week or in the following week. I took my medication like I was supposed to. I started to learn about the different things I would eat that would trigger acid reflux. I took a step back on eating foods that might trigger certain things. And I exercise a lot. I got really deep into meditation, trying not to stress, and doing things to help me regulate my illness. I would go to spas and get massages to get my blood circulating. I would go to salt therapy to open up the airway, and I still do that. Not as much, but I do it. 

I just enjoy life as much as I can without the extra stress and continue to learn and educate other people on how it’s not the end of the world. We can change things around and live a much healthier life than the norm that we are expecting. 

Tameka's third annual Scleroderma Walk with her family!
Tameka’s third annual Scleroderma Walk with her family!

What medications have your doctors prescribed?

CellCept is one of the high doses of medication that I was prescribed for my lungs, omeprazole for acid reflux, and the Albuterol is for the pulmonary as well. I was taking 13 pills a day because the CellCept was like 6 a day, the omeprazole at the time was twice a day, and there was another pill that I was taking. I can’t remember, but they took me off of it because it was causing my blood pressure to go really low, and I didn’t really need it. I remember it was for blood flow.

I educate myself on the different medicines as well. I’m very stubborn, and the doctors will tell you that about me! If I don’t want to take the medication, I’m going to put that out there. I am not telling anyone who has an illness not to take medication, though. This is my choice, and it works for me. It might not work for them, but it works for me. So I don’t take the medication, and I substitute more of the natural and herbal stuff because other medications trigger things that I don’t want to trigger within my system.

Tameka at a spa in Georgia, which helps improve her blood flow
Tameka at a spa in Georgia, which helps improve her blood flow

What lifestyle accommodations have you made?

A lot, so that’s a good question. Right now, my esophagus is affected by acid. To be honest with the world, I am back on omeprazole because I have to clear the airway. Sometimes, when I’m not taking my herbals like I’m supposed to, that’s what occurs. To regulate it, I go back on the medication for maybe 30-45 days, because it takes 30 days for the medication to actually work into the system. I get back off it once it’s regulated. Then I say to myself, “Okay, you have to make sure you’re doing your herbal remedies and whatever you need to do to regulate.”

I’m suffering a little bit because I am forcing my voice. I’m overworking. It becomes frustrating when I have to talk to my students or when I have to talk to people because sometimes they don’t understand me clearly because of that. In terms of my eating habits, I can’t enjoy the foods that I used to love so much.

It’s both good and not good. Sometimes, when your body is used to something for 20, 25, 30 years, and then you have to switch it, your body goes through a shock. It causes mood swings, cravings, and all those things. So I’ve been through that. My habits have changed. I do more meditating and try to get my mind to say “this is not good for you.” 

I’m really able to be overly supportive, if that’s the word, for my children because I believe that they need all the support they can get. Sometimes, my body doesn’t allow me to move the way I want to physically because I’m sore. There’s inflammation in my hip, so sometimes I can’t walk long enough or do certain things. Breathing can be hard, so I can’t talk for a long period of time sometimes. I’ll take breaks. I can’t walk up a small flight of steps. It causes me to breathe harder and have my lungs work harder. So, I have to eliminate some of the things I shouldn’t do. I either cut down the time or just eliminate it.

As a high school guidance counselor, how do you adapt to challenges?

As a high school guidance counselor, I work remotely because of COVID and because my immune system is very low. Even with the immunization shot, I’m still at high risk of contracting COVID. 

I love what I do. I’m just struggling now with possibly having to go back to work and what’s going on with my body. I can’t walk up a lot of steps, which is part of work – you have to see students. I go to the classroom to check in with them and make sure they don’t have any emergency issues teachers may need me for. That’s going to be a really big challenge for me. I’m pushing, and I’m hoping that people such as me who struggle with autoimmune deficiency will be able to continue to work remotely and not be stigmatized as disabled and unable to work – because we can still do the work! Times have changed. 

There are millions of remote workers, and our work can still be done. The only thing that affects us is the fact that our immune systems are so low that we’re at high risk of contracting something. That’s the thing. We can work! 

What are your hobbies?

I want to be an advocate for people such as ourselves. As I said, we are not disabled to the point where we can’t produce. I love to have a voice for people. I love to do motivational speaking. I’m looking to do more of that. Interviews like these help me out a lot. I did a great one with Ann, who has her own podcast (Mogil’s Mobcast) for scleroderma. She’s phenomenal. And this interview! I was so excited to do this. I love it. This is one of my hobbies. 

I also love to dance. It helps you stay ten years younger. And I love enjoying my children and seeing them grow as young men – my grandchildren as well. In general, I enjoy spending time with my family. 

And I have a t-shirt line called “It coulda been worse.” The slogan comes in different colors, and it represents all illnesses. You have pink for cancer, purple for lupus, things of that nature. Part of the proceeds were going to the Scleroderma Foundation.

I would also like to continue to have concerts spreading awareness about scleroderma with other illnesses. I just started my new t-shirt line called “Healed,” which I launched yesterday. Again, all of these have different colors. The ribbons represent different things.

Tameka Nelson 4

What kinds of advocacy are you involved in?

I was part of the Scleroderma Foundation in the tri-state area. I work with the directors. I share my stories. They reach out to me, and if they have interviewers to interview me for a story, I’m part of that. 

With my shirts, I send out my story to everyone who purchases a shirt. They get a scleroderma band and a pamphlet to learn more about scleroderma. This way, my story gets shared around the world.

I also tap into people like my doctors. They deal with a lot of patients with scleroderma. My doctors share my story with their patients. I’m normal. I go in there like “Hey, Doc! What’s up?” We have this great relationship, and they love it. We just have a great time. And when other patients come in who are down and depressed with no hope, the doctors share my story with them. The doctors connect me with them to help, I hope, in what they are going through.

Tameka on the launch day of her podcast, It Coulda Been Worse
Tameka on the launch day of her podcast, It Coulda Been Worse

Could you please share your experiences with instilling hope in others?

I did a concert for the first time ever, and there was a young lady there who, I guess, was watching my page. And so it’s just so crazy… not crazy, but it’s a blessing how God works. I have a goddaughter (who actually has her own t-shirt line as well called “Resilient”) who knows the woman very well. 

But I went to a cookout the week after I did the concert, and that young lady was there. My goddaughter wasn’t there. Someone else came up to me and said, “Tameka, there’s a young lady from Harlem who’s over there who would like to speak to you. She was diagnosed with scleroderma too, and she’s dying to have a conversation with you.” 

These are the things that I’ve seen change: when I speak to them, then I start seeing them share their own stories. That’s what I look for. That’s my goal when I advocate and when I share and when I educate. 

I’m tapping into those patients that I used to be, living underneath a rock because they are scared of what the world may perceive them to be or look like, or scared the world may make fun of them because of the tightening of their skin, the small lips, the pigmentation, the loss of hair… whatever it may be. When I see that now they’re coming out and they want to share, they want to be a part of the show, and they want to speak – THAT’S my work. I’ve been seeing more of that.

And the support system from the people who buy the shirts is great. They share my stories. They hit the share button on Instagram. They “@” this person and “@” that person – that’s what I’m looking for, and that has been happening, so now more and more people are learning about this. “Oh, I heard that before! Oh, I heard that!” That’s the goal.

What prompted you to start the “itcouldabeenworse_” Instagram page

I started it when I started to see change in how many people were coming out to share their stories with scleroderma and, really, all illnesses; I’m doing all illnesses. They go, “Hey, I’ve been diagnosed with cancer. It could have been worse, sure. Your story inspired me. I’m not going to go hide underneath a rock because the doctor said I have two years to live. It could have been worse. He could have said that I have two days to live.” That’s an example. Of course, you don’t want to hear two years, but I’m saying anything can change.

How has your diagnosis impacted your relationships and support system?

My family is very family oriented. My friends have been wonderful. And my mom, Arlene, she’s phenomenal. She’s always there, even more now than ever. My sisters, Asha and Joanne; my children, Tyler, BJ, and Noah; my grandchildren, Storm and Harmony; they enlighten me so much. My best friend, Janell. My brother and dance partner; Storm; my sister-in-law, Digna; my brother-in-law Kendu, my nieces Olivia and Sophia, and my nephews Seth and E’dreace. My sisterhood friends/family Asha, Tamara, Kia, Fendi, Janell and Nikki. We hung out enormously for my birthday. They flew down here, and we had a phenomenal time. It was so amazing to see the support and love that I have.

I push through because it helps people see that I am resilient, even with an illness. There’s hope for those who feel there is no hope for them. What I do say is that I have a superpower. When you speak those words and think those words; you manifest those words into the universe and it becomes just that. When you start saying, “I’m ill. I have this,” or that’ you manifest those things into the universe and those things start to occur. So be very careful of the words you speak and negative thoughts you allow into your mind. The reality is that yes, I was diagnosed with an illness. But in my mind – in the reality of my mind – I have a superpower to change and improve the world. 

So, support is great. From the different podcasts that reached out to me to share my story, from the Scleroderma Foundation, from people who have supported me in all aspects of my life. Thank you for everything that you’ve done. It keeps me going. I’m writing a book right now. It’s called It Coulda Been Worse. It’s about my story and my life.

Tameka and her family during Christmas vacation
Tameka and her family during Christmas vacation

Is there anything you wish you had known earlier?

I wish I knew more about eating habits, and I think we all struggle with that. I think 99.9% of all illnesses come from our eating habits. I think if we change the way we eat, we’ll see less illnesses occur. Not saying completely, but we can catch them in time. I want to promote “health is wealth,” because that’s really what it is. It’s not about money. It’s the health part. That’s where the wealth really comes in. 

We don’t know everything, and we’re not going to know everything. My blessing is being able to know it in time to change, if that makes sense.

Do you have any final advice for patients with chronic illnesses or scleroderma specifically?

For everyone and for all illnesses, I always try to instill in everyone that life is a challenge. We’re going to go through challenges regardless of our lives, regardless of our money and regardless of our money and regardless of our daily living and routines. It’s how we get through that challenge that defines us – to have that strength is so important. 

Challenges are learning experiences. Stop looking at a challenge as a negative, because it’s not. Challenges set you up to become stronger and to be able to deal with life’s situations without becoming stressed. It’s the educational aspect of life. Tackle those challenges as positive, and always look at every outcome in your life as a positive. Because no matter what you’re going through, it could have been worse.

Is there anything else you’d like to share?

Yes! I would love for everyone, if you can, to follow me on IG: @itcouldabeenworse_. You can reach out to me in a DM if you would like to meet personally about anything that you’re going through. If anyone’s in need of a motivational speaker, I’m open to joining your event and sharing my story. And if you want to purchase an “It coulda been worse” shirt or my new line called “Healed” – you put that in existence – we are healed, feel free to DM me on the same IG page. Thank you all so much for the support. And always remember, No Matter What You’re Going Through.. “ It Coulda Been Worse”

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Sarah Medeiros

Sarah Medeiros

,

Portland, Oregon (United States)

SARAH MEDERIOS

Scleroderma Stories Issue 5

Sarah Medeiros 1

Please introduce yourself

My name is Sarah. I’m originally from Hawaii, and I’m currently in Portland!

When were you diagnosed with scleroderma?

I was diagnosed with scleroderma at 23 after I visited Wisconsin, where it was one degree and extremely cold. Coming from Hawaii, it was a new experience for me, and I didn’t have the right winter gear. I didn’t think much of it at the time. However, when I returned home, my fingers turned deep purple, and I experienced a lot of pain. It turned out to be a condition called Raynaud’s syndrome. 

It persisted for weeks, and I finally went to a doctor, who initially dismissed it as a mild issue that would go away – but it didn’t, and my finger remained purple and painful. Eventually, I was diagnosed with a rare autoimmune disorder, which was the one mentioned on the back page of the handout the doctor gave me and told me not to worry about. 

Sarah and her parents
Sarah and her parents

Could you please tell us about your career in healthcare?

I work for Boseman Health, and I’m a lead recruiter there. I’ve worked there for almost three years. One of the things that got me in the healthcare field was just being a patient myself, especially of that hospital. 

I’m really passionate about patient care and general well-being. Even though I’m not giving direct care in my job, I’m still supporting the people who do so I really find a lot of fulfillment for myself, specifically because of my history with healthcare. I see myself staying in healthcare for the rest of my life.

Sarah went to Europe last year with her friend and then also alone!
Sarah went to Europe last year with her friend and then also alone!

How was scleroderma impacted your relationships?

For me specifically, I feel like it has been a little isolating. I think a lot of times too, because I look healthy on the outside, people don’t realize how much I suffer every day. You know, they call these invisible illnesses.

It’s not something I want to talk about either, because I don’t want pity. I don’t want people to feel sorry for me. Sometimes it’s helpful to tell people like my co-workers though, since it affects my work. I definitely take more days off from work than a normal person. Just depending on the day and my symptoms, there are times where it’s harder. But again, since I look really normal, I struggle with this kind of need to prove that I’m actually sick. I worry that when I call into work and say I’m experiencing “XYZ,” that they’re thinking “Oh, she’s just lazy” or you know, “She’s just calling in sick again.” I know what that’s like, but in reality, my struggle is very real. But I still struggle with that mentally, wondering “what do people think about me when I do stuff like that?”

Even with family. My family and friends are so supportive, and they love me and care about me. I know that. But there’s always that feeling to a certain level, I think, for people with any autoimmune disease – or any disease really. 

How have you found people who can understand your “invisible illness’?

When you’re sick, it’s just this thing that nobody can really understand unless they have it themselves. That’s why I started posting on Instagram a bit about my disease in general. Sometimes, social media and the internet feels like the only place you can truly connect with other people who can understand you and not judge you. You can find comfort in that. 

I know when I first got diagnosed, there was this scleroderma forum that I used to post on a lot, just trying to get advice and learn from people who have the same disease as me. No one can really understand what you’re going through unless they are also going through it.

Sarah with her best friend, Allison!
Sarah with her best friend, Allison!

In what other ways has scleroderma impacted your life?

When I was diagnosed, I was 23 and had never really wanted to have kids. Nevertheless, when I first got diagnosed by my rheumatologist, they told me I shouldn’t have kids for at least the first five years after being diagnosed. Suddenly having parts of your life predetermined for you, or decided for you, was a big adjustment. You kind of mourn it a little bit. You have a major decision taken away from you, and that can be really hard to deal with. I’m sure I’m not the only one.

A lot of people are diagnosed after they’ve actually had their babies. I got diagnosed so young that I feel like it would, just for myself, be a little irresponsible of myself to have children at this point just because of the risk that it would be. I think what that would look like. But you know, having major decisions like that being taken away is something that maybe a non-sick person wouldn’t have to think about.

What financial effects has scleroderma had on your life?

While trying to find the correct medications and the right combination of them, there was still damage being done. Even now, after the transplant, there’s still things coming up. I think that’s the hardest part — taking the meds and thinking, “Okay, I’m doing well,” and that the meds are helping. However, in reality, they’re only helping with some of the symptoms, not all of them. 

For example, even though the CellCept helped my hands and my skin, it didn’t help my GI system, which still doesn’t work properly. The first thing to go was my esophagus. In fact, two weeks ago, I found out my stomach is paralyzed. I’ve had many tests where they say I’m fine, but it’s just one of those things where you hope that the medicine is working. 

How have you adapted your hobbies?

I used to be a big soccer player, and I exercised a lot. Scleroderma has made working out consistently really hard. I would say that’s kind of the biggest thing – seeing what I used to do versus how I am now. I can’t be quite as active as I used to be. I just have to be thankful for the time that I can be active and participate in stuff like that.

I will say, in the beginning when I was first diagnosed, obviously I had no idea of what my life was going to look like. I went through this moment of thinking “Oh. My. Gosh! My life is over.” But I can say that my life has not changed too much. I still do my best and do everything I can that I’ve always wanted to do. I do a lot of handmade stuff, like crafting. I create earrings. A few more of my hobbies are traveling and doing standup comedy.

I try to keep myself busy and do things that I love to do, regardless of whether I’m sick or not. Sometimes I hit physical limits when I’m painting or coloring or something. I can only do it for so long. But I just do what I can do, and then be happy with it. 

Sarah Medeiros 5

What advice do you have for people with scleroderma or other chronic illnesses?

It’s totally okay to be sad, and it’s okay to take the time that you need to digest everything that’s happening. I think it’s important to take that time; just getting diagnosed with something is a big thing to have happen, no matter whether it’s scleroderma or not. 

On the flip side though, I would say there’s still hope for your future. Don’t give up on any of your dreams, regardless of how you think they might be affected by this disease. You have no idea. I mean, scleroderma hits everybody so differently with their abilities of what they can or can’t do. I thought the worst. When you start looking it up, it can look really horrifying and horrible. It is. Don’t get me wrong. But I have been so fortunate that the way my body has handled it is different than other people’s, and I am still able to do a lot of the things that I love. I don’t feel like I’m missing out on a whole lot of things that I wish I could be doing. Again, I can’t stress how fortunate I am! 

Especially if you’re young, take it seriously but also remember that you don’t know what’s going to happen tomorrow. Ultimately, it will be okay!

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Rashmi Bhasin

Rashmi Bhasin

,

Mumbai (India)

RASHMI BHASIN

Scleroderma Stories Issue 5

Rashmi Bhasin 1

Please introduce yourself

My name is Rashmi Bhasin. I live in Mumbai, India, and I have been a patient of scleroderma since 2011. Before that, I had symptoms for three years but couldn’t get the right doctor because scleroderma is not commonly known in India. A lot of medical facilities are not capable of understanding the symptoms or correlating it to a disease. It took three years to get to a proper doctor, because even today in India mentioning a rheumatologist is seen as “an outsider doctor” because many don’t know what they do. 

Right now, my foundation (Scleroderma India) is very important to me. It is my passion. I live and breathe my foundation.

What was it like being diagnosed in India, where scleroderma is very rare?

It was in 2011-2012. I was about 34 years old and was trying to conceive but couldn’t. My physical symptoms and my blood work were very very different, so they kept chalking it up to mental trauma or mental issues. But I knew it was not a mental issue… we failed our attempts (at a child) every time, so that weighed on my mind, but I was having difficulty at my daily job. I was frequently tired, my blood pressure was out of the roof… something was not correct, but the doctors could not understand where they were going wrong. 

The symptoms started with a lot of pain in my fingertips, like someone was trying to put a nail through my thumb. The pain was excruciating, and my skin started turning very hard, dry, and itchy. I noticed that small things like putting a lid on the pressure cooker, trying to hold something with my hands, holding a knife, or writing on paper were getting more and more difficult. They said carpal tunnel and said I’d have to get operated, but my husband wasn’t happy with the diagnosis so we opted out. 

My daily routine continued to become more challenging… At times, even buttoning my pants or putting a thread in a needle became a big challenge. I was starting to see that some things that were not even noticeable before were becoming more and more impactful, but I could not get a diagnosis.  

I got a biopsy which said scleroderma, but the dermatologist decided to treat it with local application cream instead of referring me to a rheumatologist. It really didn’t help because you can’t control scleroderma with a topical cream.

How did you feel after the diagnosis?

For the first few months, I really didn’t understand anything about autoimmune disease. It didn’t really sink in for a very very long time. It was like Greek and Latin to me, and the only thing I understood was that it was a serious condition. Today we have forums, but even 10-12 years back all we had was Google, which would give you the worst scenario that you’d die in the next few years. 

Doctors don’t even really know. I’ve been really lucky that I got one of the best rheumatologists in the world. He is my friend and philosopher today, but I used to be scared asking him so many questions because you’re not encouraged to ask doctors many questions. 

I was doing all my doctor visits alone, and everyone thought “she has nothing to do so she keeps visiting the doctors.” I told my doctor my symptoms for about 40 minutes and when he said “child, I understand,” I think I cried for 30 minutes because finally someone was not telling me to see a therapist! Instead, someone was telling me “I understand what you’re going through.” 

Little by little, I went through books over a couple of years so that the diagnosis could really sink in.

As you came to understand scleroderma, what were your biggest challenges?

That I would not have a child because it is too difficult carrying the baby to term was a big compromise for me, because I always wanted children. I had to leave my job because I was perpetually exhausted and I developed IBD, so it was too challenging to carry on working. I gave up work around 2016. I had been working for over 26 years and, suddenly, I had a big vacancy in my life. I had nothing to do. 

That was very challenging, and I went through a phase of depression because I am not one to sit idle. Even when I was not working I was perpetually doing something, like a course to upgrade myself or something. But I was stuck in a big vacuum for some time until the forums came into the picture. I never fought it, and I never became negative about it (like “Why did this happen to me?”), but it was a challenge because I developed symptoms very early and my tolerance for medicine was very low. 

My doctor has to keep starting and stopping medication because I start showing very weird symptoms – like last week, when I started with a common cold then suddenly had to go to the ICU for a 105° fever. But *knock on wood* I think I’m in a good shape today, no complaints. 

Could you share more about your role in Scleroderma India?

Around 2015-2016, I started talking to a lot of people, correlated symptoms, and started following scleroderma medical foundations. I always told my doctor I wanted to start a support group because we have very very poor diagnosis and awareness of scleroderma for all the people affected by it. Neetu Wadhwa (Scleroderma India’s late founder) reached out to my doctor in 2021, and he put us in touch. She was in a very bad state and on oxygen support when I met her, so early on, I started taking more responsibilities. When she passed away in 2022, I started managing independently. 

I started realizing what we’re missing in terms of treatments, benefits, and support groups for scleroderma. India isn’t a great believer in support groups; we still shy away from seeking help. I can go to a doctor if I have an issue, but I wouldn’t go to a therapist or support group. Asking for mental help is still a very big taboo. We hid my disease from my extended family for many years, but little by little, I realized how important it is to open up about the disease when I spent time in the online communities. I don’t shy from talking about my condition or the challenges, and I’m very open about it today, which I was not a couple years back. 

What is something you’ve learned over time?

My doctor would dedicate one day of the week to seeing scleroderma patients, so I would meet a lot of them at the clinic from the beginning, when I didn’t know much about the disease. Initially, I was very scared, because I would see people with crooked limbs, on oxygen support, and disfigured features. I was thinking, “Is this something that happens to everyone?” Now, I know this disease is different for every person. But not knowing that back then gave me a lot of fear. I wish I knew that sooner, because no two people show the same symptoms or take the same medications in the same way. 

Acceptance was a big thing for me. Until you accept your disease, it gives you a lot of grief. We have to make adjustments to our lives for all kinds of diseases: cut down on sugars, get exercise, watch your diet for diabetes, and so on. But with scleroderma, we make it such a big deal, and people think “Oh, why me?” as if it is the end of their life. If we have acceptance for the disease, we can move on and make those changes so we can keep living life. This is easier said than done, and not every condition is the same. But still, you have to fight it out instead of thinking about what you can’t do. Everyone loses ability as they age; it is a part of life. 

It is very important to understand the disease. Don’t use Google; talk to someone who knows something about the disease, talk to a support group, talk to a medical professional. Google is not the right person.

What symptoms have developed since your diagnosis?

I have joint pains, skin rashes, stomach problems like ulcerative colitis,  diarrhea, or vomiting, and I catch infections easily. I also have myositis and fibromyalgia. My skin tightening was there initially, but I took cyclophosphamide for a year and two cycles of rituximab, which helped. Now, my skin is loose and pretty normal for scleroderma. 

Which symptoms are the hardest to deal with?

Honestly, I don’t think about it in those terms. The more you think about the symptoms like “Oh it’s so difficult,” it gives you more trouble. I take every day as it comes, and I deal with it. When Neetu passed away last year, I took it as a personal loss. I don’t want something like that to be repeated because doctors give bad medical advice or someone is not in the right mindframe. I want to be of some help somewhere, so I coach a lot of patients.

What treatments have you tried?

I’ve taken everything, from cyclophosphamide to rituximab. I was supposed to go on tocilizumab, but I had lung problems, so I didn’t get clearance. I am on immunosuppression and pulmonary hypertension medication, as well as some heart medication. My least favorite was an injection called Folitrax, which I dreaded all the time, because every Saturday, I would have nausea for the week and mouth ulcers. Rituximab suited me well, and it solved a lot of my problems like skin tightening and coloration, and my current medications are working well for me now. 

We are not covered with any insurance so I spend a good $200-$300 a month on my doctors and medication. This includes doctor visits (7-8k rupees), tests (10-15k rupees), and medication (10k rupees). I have not faced financial hardship because my husband earns well, but my fellow patients have a lot of struggles with this.  

What does your day-to-day look like? How have you adapted?

I like reading, watching movies, traveling and exploring new cuisines. I enjoy reading fiction because it’s a way of escaping my bad days. I like light movies; I don’t mind suspense, but I don’t enjoy medical or horror related stuff. 

I am not working a job right now. I worked for a couple years, and it was very challenging. I am managing the foundation full-time, and I have a mother-in-law who is over 80, so I stay at home and I am happy working with the forum. Scleroderma has not affected my social life at all. I still travel and meet friends. My friends understand that I might not have a good day all the time, and they are OK with that. 

I am lucky that my husband and parents are so supportive, and I have a great network. They are very patient listeners, and they don’t force me to do anything when I am having a bad day. 

The disease is expensive; my bills are in this month, but my husband doesn’t complain about it like many other Indian households. This support by itself is enough; just that I am not forced to do something every day – that I can just take a break and not have to get up. 

I’ve had to make changes to my lifestyle after the diagnosis, especially with joint pain and ILD symptoms due to secondary infections over the years. I can’t walk for a very long time, I cannot do steep roads or steps, and I cannot go to cold places because of Raynaud’s. Every day comes with a new challenge, and it can really overpower you if you let it. I never know what I will wake up with tomorrow. It might be muscle pain, weakness, joint pain, stomach pain, or something else. 

How has your mindset changed?

I believe the most powerful tool in your body is your mind, and I had to condition it a lot. It was quite the ride, especially since medications would not work very well for me. I would have ferocious side effects to all the new regimens my doctor would give me. But I learned to accept everything, and I really don’t get troubled unless it is very very extreme. I don’t let the disease overpower me. 

Many many times I could not do what I wanted to do because the disease would flare up or I would get an infection. I used to get upset, but I know if I’m not well I won’t enjoy it anyway so I just take it as part of the disease. 

When I first got diagnosed, it was on my mind all the time. The first compromise I had to make was when the doctor said “conceiving a child looks difficult.” Since then, I have taken so many precautions. I kept my temperature controlled, I stopped eating street food and ate balanced food… But little by little, I realized I’m letting the disease live my life and decide my day for me, so I did a 180. I’m trying to live my life instead. 

How did scleroderma affect your career?

I worked in the import export industry and then ran my own business for about 12 years. When I started developing stomach issues, I started getting urine and fecal incontinence, which was very embarrassing for me. 

I was also exhausted and had no appetite, so my productivity was zero. I had to give up my job because it was becoming unmanageable, and it was depressing for some time not doing anything. But I took the chance to take more courses and become more spiritual. I was my own boss when it happened, but for many patients they hide their conditions because their bosses don’t understand what autoimmune conditions are. 

Has scleroderma changed the way you approached life?

Absolutely. It has made me a much better person; I’ve become more empathetic, more approachable, more human. I will honestly not criticize the disease anywhere, because it has changed me as a person. Fortunately, I did not go through a phase where my looks changed dramatically, so I was lucky to not lose my self confidence like others. 

I dream to make Scleroderma India big so I can help patients with financial aid and spread awareness so patients can become more independent. Neetu is my inspiration… I miss her every minute of my life. 

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Nayanashree Sanikop

Nayanashree Sanikop

, ,

Karnataka (India)

NAYANASHREE SANIKOP

Scleroderma Stories Issue 5

Naina Sanikop 1

Please introduce yourself

My full name is Nayanashree R. Sanikop, but my family and friends call me Naina. I live in Karnataka, which is in the south of India. I’m a 33-year-old software engineer working for an MNC as a test lead, and I’ve been fighting scleroderma for the past 16 years. 

My journey has been pretty adventurous, and from the time of my diagnosis, I’ve always wanted to inspire people and help them lead a life with a positive attitude. I like to work on creating awareness about scleroderma, travel, and make friends. At the same time, I am career oriented.

What were your early symptoms, and when were you diagnosed?

I was diagnosed with scleroderma when I was approximately 17. The first time I noticed symptoms was in the 10th grade when I went to school early in the morning. The tip of my finger turned blue, which was very unusual because, in India, the weather isn’t cold enough that you start freezing. This continued until the 11th grade. My uncle and cousin are doctors, and they took a look and said that maybe it was because of stress about studies. I went ahead and ignored it for the time being, and I started wearing gloves and sweaters whenever it got really cold. 

But I had to go to a lot of tuition classes, which began early in the morning at 5 a.m. That was when I started riding my two-wheeler. My fingers and entire palm started to turn blue and numb, and I couldn’t hold my pen. Two of my best friends used to sit on either side and rub my hands to get them warm. They’d do these “warm-up sessions” before the teacher would arrive, and only then was I able to even hold my pen. I hadn’t experienced any other symptoms yet, so we didn’t know which specialist to consult.

Finally, one of my cousins suggested that this was something else. We decided to get it checked out at a nearby medical college. (KLE’s Dr. Prabhakar Kore Hospital & Medical Research Centre). I was around 16 or 17 at the time. They ran a series of tests, the results of which took a couple of days to arrive. I had no clue what was going on. All I could tell was that some vitals/tests were marked positive, so I could figure that it was not normal and something was wrong. After reading the reports, my uncle said I had to see a rheumatologist. I didn’t know what rheumatology or immunology was at the time.

The rheumatologist told me that it was a skin issue where scarring was happening from within, that I had to take a couple of medicines, and that my illness would be cured over a period of three to four years. She put me on steroids and a few medicines like methotrexate and the vasodilator Nifedipine. It took a lot of time for my body to adapt to medicine and my pattern of studies. I was given IV injections and saline right before my 12th board exams. These medicines caused severe acidity, and I was nauseous just a few hours before my exam, but I didn’t let it hold me back because I really wanted to be an engineer. So I kept going. Even now, I keep going; I don’t stop. Work is worship, which helps me overcome my pain.

After one year, during my first year of studying engineering, I was diagnosed with tuberculosis, for which I was given steroids. It was so painful for me to undergo HRCT (high-resolution computed tomography). I literally felt like dying when they put contrast in me. It was running through my veins, and it was like giving me an electric shock – so I was crying at the top of my voice. My uncle ran into the radiation room, where nobody is allowed. He made sure that I was fine, at least until we did the scan. We had to pause my scleroderma treatment till I finished my tuberculosis course of treatment. It was really tough, but I made sure to give my 1st and 2nd-semester exams and score well.

Naina Sanikop 2

As a high school student, how well did you understand what scleroderma was?

I didn’t think much of it because the doctor told me it was a skin-related issue. We assumed that it was pigmentation that would be cured over time. I had no clue that this was a progressive disease that would start affecting my other organs as well, and that it doesn’t have a cure. 

We hardly had access to the internet back then. I didn’t bother looking up what scleroderma is because I thought my uncle and cousin already knew about my condition, and if it was anything serious, they would’ve told me. I focused on my career because I wanted to get into an engineering college. I didn’t want to settle in India either; I wanted to do my masters in the U.S. at one of the good universities there.

The first time I started to understand what scleroderma was in my 2nd year of engineering. I was 18 or 19 at the time. I started getting really painful digital ulcers, and I had to get my friend’s help to take notes and do lab assignments. 

One of my uncles knew a rheumatologist in Bangalore, who I’m currently seeing. He explained what scleroderma was and that there might be a chance that I have diffuse systemic sclerosis. It was a bit hard to believe because I had not experienced any other symptoms yet. His name is Dr. Ramesh Jois, and he is one of the best doctors I have ever met. He’s so positive and encouraging. He’s always pushing me to keep going and remain active. 

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When did you try to learn more about scleroderma?

It was at the time when I returned from Bangalore after my consultation that I started searching more about scleroderma. The first time the doctor saw me, he compared how my nose looked to previous pictures and showed me how it had changed. My lips had also become like a fish’s mouth. He also pointed out the pigmentation and skin hardening that was already happening on my body but that I wasn’t entirely aware of.

I wanted to understand more. I read that it was going to change my face and overall appearance, and it was going to affect my internal organs. I also read that scleroderma can impact pregnancy in the future after reading many patient stories. Realizing all of this broke me. I had tears rolling down my cheeks, but I didn’t want to stop or look away. I wanted to be prepared without panicking or feeling sorry for myself. 

My friends would ask me, out of concern, about what the doctor said and how my appointments went. It was very difficult to explain it to everyone around me. My parents understood it very well.  

This was the time when I was studying in my engineering 3rd year; I started reading more about scleroderma, and I clearly understood how complicated scleroderma is and that my life would not be the same as others’. I knew the complications could turn up at any time, but I didn’t see them coming so soon.

How have your symptoms progressed since then?

In 2013, I underwent an HRCT scan of my lungs, where we saw a honeycomb pattern in my lungs. When we first saw the lung changes, they didn’t make any major modifications to my treatment. In 2015, I started coughing, so I underwent another scan. 

I still remember the exact date when we saw aggressive progression in my lung – November 29th – because it was my birthday when we got the report. I visited the doctor that evening, and he informed me that my lung showed an aggressive progression of fibrosis because of which he had to start immunosuppressants. They added additional vasodilators, along with antacids, to my treatment regimen. When I returned home, My cousins and my aunt were waiting with a cake for my birthday celebration. They knew the reports, and they wanted to take my mind off of those thoughts.

Back then in 2015, when there was significant progression in my ILD, I was able to do routine activities and even work in the office, but sitting in a room with air conditioning was a bit difficult. But in 2019, again, I started having a continuous cough, and it was very severe. I couldn’t walk 10 steps, and it was very difficult even to carry my laptop bag. So, again, I underwent HRCT, which showed a major progression in lung fibrosis, so they increased the dosage of the immunosuppressants along with steroids. That was when I started to work from home in February 2020. I moved back to my hometown just before COVID started.

I had a small ulcer on the second toe of my right leg, which wasn’t too bad. But I started noticing color changes in June 2020, and it started to get painful. It was so severe that I couldn’t sleep. My right limb was swollen, and I had constant throbbing pain. We got a Doppler ultrasound done, which showed low velocity in blood circulation. Then, we did an angiogram and learned that there was a block. My toe had turned gangrenous by then.

I had to undergo angioplasty and aspiration for the blood clot. Thankfully, after the surgery, they managed to save the rest of my foot. My lungs were also starting to stabilize slowly, so the steroids were tapered down and stopped.

Then, in 2021, I was infected with COVID. That is when the second toe of my left leg suddenly started hurting and turning blue overnight. I was prescribed a blood thinner, which I then took for 10 days. In June 2021, the same throbbing and ischemic pain started, but on my left leg this time, so I underwent an angioplasty again. After that, my right limb great toe developed an ulcer that didn’t get better even after repeated debridement. The doctors prescribed me antibiotics and painkillers.

I managed to take a trip to Rajasthan, but by the time I came back, my limbs started swelling because there was no blood supply again. After frequent IV antibiotics, it didn’t recover. We tried a second angioplasty, but it failed. We even tried electric stimulation therapy to reduce the pain, but that helped me for only three days. I was on lots of antibiotics, a lot of painkillers, and a lot of injections to help reduce the pain. 

That was the first time I stopped working for an entire month, and I felt very guilty about that and how everybody else was taking care of me. My mom was not that well either, as she was battling cancer from the past 10 years. However, she was great support and took care of me even when she was in pain.

Nayanashree visiting Bada Bagh in Jaisalmer, Rajasthan
Nayanashree visiting Bada Bagh in Jaisalmer, Rajasthan

Could you please tell us about your stem cell treatment?

The second angioplasty on the right limb didn’t open the blocks, and a doctor from Belgaum Kle suggested that I visit Dr. Vimal Someshwar for next steps. Without wasting any time, we visited Kokilaben Dhirubhai Ambani Hospital in Mumbai and consulted Dr. Vimal Someshwar (an interventional radiologist). He quickly took a look at my previous angioplasty and angiogram reports and told me that my doctors from Belgaum did everything they could, and that the next step for us was to try Mesenchymal Stem Cells to improve vascularity. 

The doctor had performed the stem cell transplant on a diabetic patient, but for scleroderma with a peripheral disease, I was the first case and it would be a new trial. I agreed, as I was in a do-or-die situation, and I always wanted to be part of such trials which can help others living with similar conditions and work for a better cause. The doctor explained the procedure and next steps to me. So, I underwent Mesenchymal Stem Cells therapy to help improve vascularity of my right limb, which would help avoid amputation and get rid of pain. The doctor guided me with post-procedure care and told me that it would take four to six weeks for results to show. After six to seven weeks, I saw a noticeable relief. I could walk easily within my home, at least. The treatment worked wonders. Now, I don’t feel any pain, and I can go out with some assistance from my friends. I ended up losing both my second toes, but I’m a lot better now. Recently, I’ve felt a little breathless, and I’ve been diagnosed with mild PAH; however, no change in my medication is required as of now.

What has been your most challenging symptom?

Over the past three years, I have had severe pain, which has greatly impacted my sleep. It has forced me to sleep in a sitting position and keep my limbs away from the bed to ensure proper blood supply and alleviate the pain. Despite this, I consider myself fortunate that I am still able to walk, as many activities have become increasingly challenging. Dancing, in particular, has been significantly affected, and I now rely on assistance from family members and friends for small tasks. It has been a source of guilt for me not being able to do things independently. 

Also, there is always the fear of losing a job. With this condition, I can’t visit the office physically, but I can still work from home – but I still end up worrying that HR might not understand my case for work-from-home approval. I’m getting good support from the Manager, but I still end up worrying about losing my job.

Nayanashree in the Thar desert of Jaisalmer, Rajasthan
Nayanashree in the Thar desert of Jaisalmer, Rajasthan

Where do you find support?

I’m incredibly fortunate to have the unwavering support and understanding of my family members. They have provided me with all the necessary accommodations since day one, whether it’s providing hand gloves, heaters in the room, or arranging transportation for me when I go out. 

My mother, in particular, has been my constant companion throughout this journey, understanding every detail of what I have been going through. My mother was my biggest support. But I lost my mother last year in July 2022 as she was suffering from cancer. This incident has caused the biggest void in my life, but I keep giving and achieving things I promised to my mother. 

While I didn’t share all the specifics with my father due to his history of anxiety, he has always been by my side whenever we had to rush to the hospital. My sisters have been equally supportive, with one taking care of household matters while the others accompany me during hospital admissions. Extended family, including sisters-in-law, have also been aware of my condition and offer assistance whenever needed, whether it’s adjusting the environment for my comfort or preparing warm beverages. Organizing my wardrobe and room is taken care of by my sister with the help of others. 

My father continues to educate and support me, despite his current struggles with anxiety. We make efforts to keep a positive atmosphere by taking walks, watching movies, and discussing my work and progress. The importance of staying positive and connected with friends and family is something I have learned from my mother.

While there were a few individuals who initially didn’t understand my condition, I made sure to explain it until they did. If someone chose not to understand, I stopped discussing it with them. Fortunately, my friends, including those from school, former colleagues, and flatmates, have been incredibly helpful and supportive. They have been understanding of my limitations and have gone the extra mile, cooking for me when I felt tired. 

I consider myself very fortunate. However, there were a few colleagues when I initially started my career who didn’t grasp the situation, placed undue emphasis on marriage, or questioned my plans for the future. But in my present workplace, I get great support from my managers who listen to me and show interest in understanding my condition. Despite my desire to go abroad, my health restrictions posed limitations in that regard.

Nayanashree's family
Nayanashree’s family

What helps you navigate through difficult times?

Whenever I feel low, I usually try to practice some light dance moves (though I can’t stand or jump around), talk to my sisters, and reach out to my friends and meet up for a coffee or enjoy a good meal together. Traveling and taking a break also helps me rejuvenate. Meeting my cousins is another source of comfort and support. Music plays a significant role in lifting my spirits. 

Sometimes, I watch random Bollywood movies or indulge in watching my favorite actor’s films repeatedly. At times, I also enjoy watching mythological TV series and not to forget the Friends series. I also spend time watching travel blogs and spend my weekends mainly on creating content for scleroderma awareness.

Naina Sanikop 7

How have you adapted to pursue your education and work goals?

Initially, finding employment was challenging due to the rigorous selection processes and specific skill requirements that didn’t consider the impact of scleroderma. I didn’t want to commit to something that would put excessive pressure on me and worsen my well-being. Consequently, I chose to pursue opportunities within my existing skill set. However, seeing my peers progress in their careers while I fell behind was disappointing. 

Moreover, during this time, my mother was undergoing chemotherapy, which required me to travel and further affected my well-being. After working for two and a half years after my engineering degree, I enrolled in a master’s program. However, I dropped out as my heart wasn’t truly in it. 

During that time, an opportunity arose at my friend’s startup, and I joined the company. From there, I transitioned to different companies, actively searching for environments that could accommodate my specific needs related to scleroderma. Temperature and airflow were crucial factors, as excessive fans or air conditioning could worsen my symptoms. I ensured I had my own room and arranged for a caregiver to help with timely meals. Hygiene was also essential when selecting a place to stay or work. 

This gradual adjustment process allowed me to make progress in my career. Fortunately, I’ve reached a point where I approach symptoms or changes with a mindset of finding alternative solutions rather than becoming discouraged.

Have you communicated with coworkers about scleroderma?

Initially, it was challenging to explain my limitations as a fresher, as there is an expectation for freshers to complete assigned tasks. Some bosses didn’t comprehend my situation. However, when there was a change in the project assessment at work, I encountered understanding individuals who recognized I had some health issues and needed additional time. 

Nonetheless, I always ensured that I completed my work on time and that my health didn’t affect it. If I noticed any changes in my symptoms, I promptly informed my manager and teammates, maintaining transparency. I believe in being honest about my work, so even now, whenever something arises, I immediately communicate with my manager, informing them if I need to rush to the hospital. In such cases, I delegate tasks to my team members. 

I have learned and try my best to keep my medical condition separate from my profession, but I am fortunate to have colleagues who are not only understanding but also take the initiative to learn about scleroderma. They consistently motivate me, acknowledge my progress, and provide support during challenging times, such as the loss of my mother or when I underwent surgery. 

How has scleroderma affected your relationships?

Scleroderma has significantly impacted my approach to relationships. At the age of 19, I became aware of the complex challenges that lie ahead. Society often labels women as “good” only if they are happily married or have children. I didn’t want to be the subject of emotion to anyone and a phase of a relationship would come with expectations that I cannot fulfill. I am not someone who would keep convincing others or explaining and take blames for my health condition. Moreover, I didn’t want to be emotionally dependent on a partner who could potentially weaken me during crucial decision-making moments. 

There were individuals who expressed interest in a relationship, and as a human being, I experienced moments of attraction as well. However, I never envisioned myself being in a relationship, getting married, or having children.

I didn’t want a third person to either strengthen or weaken me, so I avoided getting into any relationships that could potentially lead to negative outcomes. Looking back now, I realize that this was the best decision I made. I didn’t want someone to blame me or perceive my health condition as their burden. I didn’t want my inability to meet certain expectations, which often accompany marriage, to cause sadness or any other negative consequences. 

What’s most challenging about living with scleroderma?

The most difficult part of living with scleroderma is the desire to maintain independence and accomplish various tasks. Whether it’s completing my bucket list of activities, handling household chores, or engaging in travel and socializing, not being able to do everything myself brings about feelings of guilt. 

During the rainy season or winter, I often find myself confined to my home, which is disheartening. Additionally, while many people have returned to the office, I can no longer participate in physical routines or work in crowded environments like before, which is another source of sadness. It’s ironic that when I crave something, I don’t have the flexibility, but when others have it, they desire something else. 

What lifestyle changes have you made?

One notable change revolves around dressing. During cold weather or winter, I must layer up with jackets and gloves, deviating from my previous preference for trendy and short-sleeved clothing. Also, I’ve completely eliminated ice cream and cold drinks from my diet for the past 14 years. While I may buy ice cream for my cousins, nephews, and nieces, I personally refrain from consuming it due to its potential negative impact on my health. 

Furthermore, my mobility is limited. I no longer ride a two-wheeler, acknowledging my own limitations. I’ve had to adjust and prepare for a different life compared to what I envisioned ten or even five years ago. Though I understand that comparing myself to others is separate, there were moments when I contemplated pursuing my master’s degree abroad. However, considering the demanding routines and responsibilities associated with academic courses, as well as managing household tasks on my own, I realized I am not equipped to handle such challenges. Factors like weather conditions, daily chores, assignments, and cleaning further reinforced my decision not to pursue studies abroad. Although it was initially a concern, I have now come to accept it and find contentment in pursuing my academic and personal interests within my current environment.

There have been instances where I had to miss out on certain events or activities due to my scleroderma. One memorable moment I wanted to experience was scuba diving, which was on my bucket list. I also have fond memories of performing dance with my cousins, with two of them standing behind me while I performed.

Unfortunately, there were occasions when I had to miss out on traveling to a few places with my friends because of my health condition. There were times when I wasn’t feeling well or in good health, so I had to refrain from attending important events like my favorite cousin’s wedding, which happened to fall on the same day as my first surgery. Additionally, my planned trip to the US has been postponed multiple times due to my health condition. These are a few things that I have missed out on or had to postpone due to my health.

Nayanashree underwater at Neil Island, one of India’s Andaman Islands
Nayanashree underwater at Neil Island, one of India’s Andaman Islands

Has scleroderma changed your approach to life or new things?

Yes, having scleroderma has indeed influenced the way I approach life and new experiences. Although I was quite young when I was diagnosed, I gradually understood the challenges that come with this rare condition. This realization has made me view my own situation from a positive perspective. I focus on what I have and how far I have come. 

I remember a moment when I visited a doctor with my mother for her consultation, and I saw a pediatric doctor treating a child undergoing chemotherapy for a type of cancer. Comparing my condition to his, I realized that I am in a better place. 

I have no complaints about having scleroderma. It has transformed me into a better person. I have made decisions to prioritize my health, career, family, and friends. When relatives or friends inquire about marriage, I am well aware of how to respond. I have explicitly expressed to my parents that I do not wish to get married. It was challenging for my mother to come to terms with this decision. It was difficult for my cousins to accept that I am dealing with a lifelong battle and that my life may not be conventional. However, with time, they all came to support my decision.

Has scleroderma’s effects on your physical appearance influenced your confidence?

Yes, there was a time when I lacked confidence, especially when my career was not progressing as I had hoped. I believed that my physical appearance, particularly my facial appearance, was not impressive enough, which affected my confidence in speaking or being selected for opportunities. There were moments when I attributed my health condition to my setbacks.

However, I gradually realized that it was not the primary factor. It was during this time that I received support from people who recognized my capabilities beyond my appearance. My friends, cousins, and even my uncle and aunt supported my decision that I want to embrace myself as I am and not feel the need to change. 

I believe that everyone goes through phases in life where they question themselves and their worth. There are times when, no matter how strong you are, people compare you or ask intrusive questions. When you are alone at home, sitting on a couch, those questions naturally come to mind. The best approach is to deal with them, find solutions, and affirm that you are capable and have achieved great things. 

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Could you please describe your scleroderma-related medical expenses?

The cost of the basic medications for my scleroderma has increased exponentially since my diagnosis. Other medical expenses include the need for warm clothes, heaters (I look for the best quality, and my friend sends me some from the US), heat patches, heated hand gloves, and foot warmers. Along with medical expenses, other necessities such as moisturizers, shower gels, and specialized diets are also costly. 

Routine blood tests, Doppler ultrasounds, echocardiograms, pulmonary tests, and other necessary tests are all expensive but essential for monitoring my condition. Any small change in these tests might indicate the need for further medical attention, and not all patients have the same symptoms. Antibiotics, even for minor issues like fever, come in high dosages and are costly. Hospitalization is also a significant expense.

On the first day I receive my salary, I have to calculate the amount I need for my medical expenses for the month and save some money for the future. I know that someday I might become disabled and require oxygen, so I need to save for a portable oxygen machine. 

Fortunately, the insurance provided by my company covers surgical expenses and hospitalization. However, in India, there is no insurance that covers scleroderma or any condition triggered by scleroderma. 

What are your hobbies?

I have enjoyed dancing since my childhood. I have performed at numerous family gatherings, weddings, and even my brother’s college event. In school, I danced with a group of friends, and in college, we had a common group of friends with whom we gathered for weddings. 

Due to recent surgeries, I am currently unable to stand and dance, so I adapt by sitting on a chair and dancing with my friends. Unfortunately, I had to stop dancing for the past three years. My last performance was captured in a video during COVID. However, as my mobility declined, I could only perform for shorter durations. Dancing also serves as a means for my doctors to assess my lung capacity and function, given the involvement of my lungs.

Additionally, I hope to progress in my career for at least another five to ten years. However, I need to consider my health condition, since I’ve been experiencing fatigue lately. Working for ten more years would be a great achievement.
 
Furthermore, my biggest goal in life is related to scleroderma. I aspire to speak in front of a larger audience to raise awareness about the condition. I want to share my story and educate people about scleroderma, its gradual progression, and how individuals can offer support. It’s important to me to inspire others with scleroderma and help them live positively. I strive to connect with NGOs, share my journey, and shed light on scleroderma to the public. 
 
Nayanashree at Amer Fort in Rajasthan
Nayanashree at Amer Fort in Rajasthan

Are you a member of any scleroderma communities?

I have recently joined several NGOs, and I have been a member of Scleroderma India for a long time. It was started by a patient from New Delhi, whom we sadly lost last year. She conducted many mini-sessions in the group.

However, there was a negative impact on me when they created a WhatsApp group where people started calling me and spreading negativity. At that time, I wasn’t ready to talk about it, and it drained my energy. Nevertheless, I am still in contact with a few people whom I enjoyed talking to.

Being part of these communities has helped me connect with people who are going through similar challenges. We interact and share information about doctors, hospitals, and better places where people are more understanding of scleroderma and the necessary lifestyle adjustments. 

What advice do you have for people with scleroderma or other chronic illnesses?

It is easier said than done, but try to live positively. Take medication on time, eat good food, surround yourself with a positive and supportive circle. Spread happiness wherever you go, even though you may be in pain. 

While we can hope for a treatment, accepting the condition is the biggest challenge. When we accept it, we overcome our limitations. 

Not everyone can work, but find something that makes you happy and keeps you engaged. I’m positive and happy, even though I sometimes get traumatized by new symptoms. I have my friends, colleagues, and family who are always by my side in every decision.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Mercedes Howard

Mercedes Howard

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Walnut, California (United States)

MERCEDES HOWARD

Scleroderma Stories Issue 5

Mercedes Howard 1

Please introduce yourself

I’m from Walnut, California, and I am currently attending UC Riverside (UCR). I am on disability and still recovering from a bone marrow transplant and stem cell transplant due to my scleroderma. 

Could you please share what led to your diagnosis?

Since my early twenties, I had a consistently high white blood cell count, as well as this pain all over my body. They kept running tests, and I kept testing negative for autoimmune diseases — they just couldn’t figure it out. “Oh, you have fibromyalgia, take this! Oh, it’s your allergies, take these allergy meds.” So I wasn’t correctly diagnosed at the time.

Then when I was 30, I broke my fingertip. It got caught in the door. I got a mushroom fracture at my fingertip, and that triggered my Raynaud’s. First, just the tip of my finger turned cold and purple, then my whole finger, then two fingers, then even two fingers on my other hand. 

I went to my primary doctor and let her know. She identified the Raynaud’s and referred me to a rheumatologist, who then ran a whole bunch of tests. Again, I was negative for scleroderma or any other autoimmune disease but still had a high blood cell count and high inflammation. So, he diagnosed me with undifferentiated connective tissue disease.

After that, my symptoms began to snowball. My hands started to curl, and my skin started to harden in patches. With that, my rheumatologist said that my symptoms were starting to look more like scleroderma. That’s when we started taking meds and trying to find a suitable combination for me. 

Were you aware of scleroderma when you were diagnosed?

I had no idea. No one in my family has any autoimmune diseases, so it was really random. No one in my family has the same symptoms – or any symptoms at all. Most of my family is healthy. 

It was hard to find out that I have something like scleroderma. They still don’t know if this disease is genetic or just how it occurs. I don’t know what I thought it was, I just thought it was a weird thing that was happening, and that I could take some medicine and get rid of it or have a surgery done to fix it. In reality, it really is not that simple.

When they first tested me, I was showing signs of autoimmune disease but it was unclear which one, hence the diagnosis of undifferentiated connective tissue disease, which I had for about a year. Only when my symptoms started progressing were they able to narrow it down to scleroderma. To this day, I’m testing negative for scleroderma despite having all the symptoms.

Mercedes Howard 2

What medications or treatments have you tried?

My rheumatologist had me on methotrexate and plaquenil, but none of them really worked, and my condition was still progressing. We tried switching up the meds. Most of them still weren’t working. 

Then, we tried Rituxan, which is an IV infusion for rheumatoid arthritis, and my inflammation dropped to normal levels. However, it only worked for about two months before the inflammation shot back up again, and we were forced to consider other options. 

Interestingly enough, I had met the comedian Bob Saget, who was a champion for scleroderma patients due to his work with the Scleroderma Research Foundation. I had the opportunity to tell him what I was going through and thank him for the work that he did over the years. 

He told me about a new drug coming out that has already been tested, which could be really helpful for scleroderma patients. It was called Actemra. In the following month after its release, that’s what they put me on (in combination with CellCept), and I was taken off the methotrexate.

CellCept gave me the ability to open my hands again, in conjunction with me practicing dexterity by knitting. I still get pain, and I can’t leave my hands in the same position for long periods of time, but I have dexterity now. Along with that, the Actemra kept my inflammation low, which was great because it was so hard to move with the inflammation.

Could you please tell us more about your educational and work journey?

I was working at Walmart after I was diagnosed, and Walmart has cement floors, so it was hard for me to work. I was using a cane. I went to the Department of Rehabilitation and I let them know of my diagnosis, that I was struggling with work, and that I needed something else to do. My doctor told me that I couldn’t work at Walmart; with all that walking and the cement floors, it’s too much work. 

With the Department of Rehabilitation, I did a week’s worth of tests to find a better career that I could fit into. They had me go to Cal State San Bernardino to test if I could work in an office. I couldn’t even stay awake for the classes, and I had issues filing,  so I was told it was better that I go back to school instead. My counselor told me to go for a Master’s, and that they’d pay for it. 

Right now, I’m working on my Bachelor’s and soon I will be going for my Master’s in Sociology

Mercedes Howard 3

How have your symptoms changed since your diagnosis and transplant?

While trying to find the correct medications and the right combination of them, there was still damage being done. Even now, after the transplant, there’s still things coming up. I think that’s the hardest part — taking the meds and thinking, “Okay, I’m doing well,” and that the meds are helping. However, in reality, they’re only helping with some of the symptoms, not all of them. 

For example, even though the CellCept helped my hands and my skin, it didn’t help my GI system, which still doesn’t work properly. The first thing to go was my esophagus. In fact, two weeks ago, I found out my stomach is paralyzed. I’ve had many tests where they say I’m fine, but it’s just one of those things where you hope that the medicine is working. 

I’m hoping that this transplant will stop things from getting worse, but I’m really not sure. I still take Actemra once a week using my self-injection at home, since my inflammation returned following the transplant. It’s hard to say if I’m okay because there’s just one thing happening after the other. I still don’t know when my stomach became paralyzed and whether it was before or after the transplant. It just feels like a rollercoaster.

What challenges have you faced recently?

Actually, the past four weeks have been quite rough on me. Three weeks ago, I found out that, possibly because of being subjected to a lot of radiation, I may not be able to have children. On top of that, two weeks ago, I found out about my gastroparesis — my paralyzed stomach, which relates to one of my biggest challenges that I am currently facing, which is my diet. Owing to my gastroparesis, I can’t eat a lot of the foods that I used to eat. I have to instead find and prepare the foods that are safe for my stomach and safe for me to digest. 

I’m a foodie, so it’s hard to think that there are some things that I just can’t eat anymore. At the same time, I have a hard time standing for a long period of time to cook, and repetitive motions with my hands are also a challenge. It’s hard for me to cut vegetables, for example, and prepare a meal. I’ve instead been having to teach my fiance how to cook so that he can cook for me, because I can’t do it that well. 

I now have diabetes from my gastroparesis, because my food is staying in my stomach for so long, causing my blood sugar to stay high. I’m having to take insulin. I actually have a doctor’s appointment tomorrow, where I will ask for an insulin pump and a Dexcom to track my blood sugar because now, with this diagnosis, there’s no telling how long I’m going to have it, but it’s probably going to be permanent. It’s yet another major change in my life that I wasn’t expecting. I really didn’t take the news well.

In these past few weeks, I have also had to get my esophagus dilated. My esophagus doesn’t work well, and I can’t move it, so sometimes it starts to constrict. The doctors have to stretch it for me so that I can eat better. Otherwise, even my pills will get stuck in my throat. I can feel it happening, so I’ll know when to go in and get my esophagus dilated again. It’s something that I have to get done every once in a while.

Another thing I’ve been having to deal with after my bone marrow transplant is getting all my immunizations done over again. Chicken pox, rubella, measles, MMR — all the stuff you get when you’re a kid. I’ve been having to do them again, since they completely wiped my system clean with the transplant. That has been another one of my latest missions — and goodness, those shots hurt! I don’t know how we did it as kids. 

Now, it’s just the medical information that’s throwing me for a loop and affecting my daily life, but I’m trying to do more things to not think about it and to take advantage of being  here. 

Could you please tell us about your life as a student?

In my daily life, I still continue as a student at UCR. What I didn’t realize when moving to Riverside is actually how cold it gets over here, which has been a struggle for my joints. I don’t do well in the cold, and I get pain, which is in contrast to when it’s hot, because then I get to the point of passing out. That happens even for something as simple as taking a hot shower… and nobody likes a cold shower. Surprisingly though, I’m still thriving at school. Of course, there are hiccups along the way, but that’s normal — I’m a student.

Overall, I have a lot of support in school. I can’t take notes because it’s hard for me to hold a pen and write for a long period of time, so I was allowed to use an application called Otter to record my lectures. I use my cane at school, and they have a tram service to take me to my classes if I need it. I also have a handicap pass, which allows me to park closer to campus. 

Mercedes Howard 4

Could you tell us more about knitting and your other hobbies?

I’m actually a mentor to a nine-year-old as a part of a Big Brother Big Sister program as well, so I have a nine-year-old little sister who I hang out with. She’s aspiring to be in the WNBA. We talk a lot about what her college is going to be like, what her high school is going to be like, what road she’s gonna take, and stuff like that. 

Before I was diagnosed, I learned to knit, and now I actually knit a lot. I knit scarves and blankets. In fact, I knitted two blankets and a scarf that are actually on display now, because I submitted them to a competition at the LA County Fair. I won third place on both blankets, which I’ve never done before. 

That’s the new thing that I’m trying to do — to submit stuff and get involved in competitions. Even if I don’t win, I’m just happy that people can see what I did, and they can see my name on it. If we hadn’t found the right medicine cocktail, my hands wouldn’t have been able to knit. That’s one of the main reasons why I tried it as much as I can, because I might not be able to later. 

I also plan to teach knitting as well. My eight-year-old and nine-year-old nieces also want to learn to knit, so I’m planning on teaching them to do it. At my school, some people saw me knitting and I was talking about how knitting is a good stress reliever, so there’s some people at school who I’m going to teach how to knit. I’m working with the Big Brother Big Sister program to possibly set up a workshop where we bring other people in, and I teach them how to knit.

I’m working on blankets for friends, and I’m doing a lot of family outings (we’re planning to go to the LA County Fair together later this month). In general, I’m spending a lot of time with my friends and family. I’m always at my sister’s house, I talk to my family a lot, and I text them a lot. With my friends, even those since seventh grade, we talk every day. Actually, one of their daughter’s is graduating from our high school, so I just visited my high school recently. I’m trying to do as much as possible with my friends, my family, and even with my fiance’s family. We always have a lot of gatherings, and we try our best to make it to them.

I just think about the fact that there’s a possibility that I wouldn’t have been able to do it, and that I might not have been here. It pushes me to keep doing new things and keep doing my best to pay it forward.

Has your family been a strong support system for you through your journey?

Yes. My mom has been the most supportive. She stayed with me in the hospital when I was at City of Hope for about a month. If I have a medical procedure or anything like that, then she’ll drive me or I’ll stay at her house, since I’m not supposed to drive after. She tries to come with me to my appointments, even if it is just to meet me there. 

One of my sisters is also always researching. She’s always looking at articles and stuff like that, trying to see if there are any other medications or anything else that could work for scleroderma, or things that I can ask my doctor about. My other sister is also supportive. She’s a nurse, and she always tries to calm my fears and anxieties.

For the most part, the only thing is that it’s hard for me to explain to them and my fiance how it feels. I can tell them what’s going on. I can tell them the symptoms, but because they’re not experiencing it and since I don’t show any physical symptoms for them to see, there’s nothing solid for them to grasp at. A lot of the time, they might not understand why I can’t do certain things.  

That’s the only thing that I’m still struggling with in terms of my support system. They try a lot to understand the situation that I’m in, but at the end of the day, it’s still hard for them to fully grasp it. I feel like a lot of the time when I can’t do something, they take it as me being unwilling rather than being physically unable.

How has your outlook on life evolved following your diagnosis?

I think the biggest change was having to realize that I have to go back to school and basically start from scratch. To be honest, I was both a little scared and little excited. 

When I was first diagnosed, it was just doom. I was not happy, and in my head, it was life-ending because of all the symptoms and all the portions of my life that it was going to take over, particularly the physical aspect of my life. I thought, “Well, what if they don’t find the medicine? How long is it going to be til I’m gone?” That’s all it was at that point when I was first diagnosed, before the medicine was working. It was just all negative.

Now, with the meds that are starting to work, I was able to be positive again. I looked forward to the fact that I was going to school, and that I wouldn’t be in debt when I graduated. I’d be able to help people. While talking to my disability coordinator at UCR, he suggested that I take that job and that I work that way in that position because I understand how difficult it is to accept your disabilities and have to ask for help.

I’m trying my best to help others with scleroderma, or just others in general. I’m doing all this because I want to help and have the capacity to do so. Before the condition, I would help people, but I wouldn’t think to go to school and do it for a living. I wasn’t in that head space. I couldn’t even do customer service at Walmart.

With this condition and after seeing the reality of mortality, it forced me to look at the world in a different way. Now, I’m just trying to pay it forward and help more people by letting them know that diagnoses or disabilities can be tough, but we still have the capacity to rise above it.

Recently, I actually did work with the PR team at UCR for the Disability Department, and we took some photos for ads. One of the people working the event even had scleroderma. You could see her hands were curled. I said, “See, this is what I’m talking about. You didn’t let it stop you.” This is what I mean. We can still achieve things regardless of this condition. Granted, it imposes us a lot more limitations, but they are limitations that we can learn to work with and move forward with. 

Mercedes Howard 5

Can you talk about your journey of empowering others through “Under the Hood”?

I started a Facebook page titled “Under the Hood” because my name is Mercedes. I feel that my diagnosis put me on a path that I wouldn’t have taken otherwise. I wouldn’t necessarily want to thank scleroderma, but it gave me an opening to be a better self, and I wanted to be able to share that path with others. 

There was another blogger who shared her struggles and everything she was going through, and I realized how much it helps to see that even though what we’re going through is really tough, we’re still trying to make the best of it. It inspired me to share the good, the bad, and the ugly of the condition and of my journey. I wanted to let people know that we still have bad days, but for the most part, we have another day to do something great. I wanted to help motivate those with scleroderma to not let it be their death sentence, which is what I was feeling in the beginning.

Have you been able to connect with other patients? 

Yes, there’s some on my personal Facebook page. I’m also on the scleroderma stem cell transplant Facebook page, and I let them know how I’m doing after my transplant. I’ve gone to an event with the scleroderma community before the pandemic as well as virtual support groups for scleroderma. Two of the people I’ve come in contact with have written a book about their journey and encouraged me to write one about mine. I’ve thought about it. I haven’t done it yet, but I would love to.

It helps to talk to others that are dealing with it because they understand it. The thing with scleroderma is that everybody gets it different. Not everyone uses the same medications, so in the scleroderma community, we just discuss what has worked for us. Some people don’t know if a medication will work, or they might not know that it’s an option. 

For example, recently in Canada, they approved Viagra for treatment of Raynaud’s because it opens the blood vessels. We already have that out here in the US, so we were able to share that with others and share our experiences or side effects with it. That’s what I like about the community. Even with the Southern California Scleroderma Foundation, Tina called me when I was in the hospital to check up on me. 

Building this network of people and supporters is one of the biggest things that we can do to get through this. Without it, it would be rough. On the other hand, there’s also the aspect of finding out when someone in our community passes away. That’s some hard stuff. We’re able to help and support the families as they grieve if they are open to it. 

I try to stay connected to the community because we need to support each other. Everyone has it different. There’s no cure, and we’re always going to be having issues. Sharing our experiences and staying connected with each other helps both our awareness of our options and our emotional support.

Mercedes Howard 6

What advice do you have for people with scleroderma or other chronic illnesses?

I would say “don’t let it stop you.” Like Bob Saget said, have hope. He was always so positive, and I was devastated when he passed away. Before that, he gave me a hug and said, “We’re not going to stop until we find a cure.” I saw him again a month before he died, and he said, “This is why we do it. For people like you.” It’s things like that that help me. 

Find a support group, share things with them, and ask them questions. If your doctors give you a hard time, for example, they might give you a doctor they recommend in your city. Don’t be afraid to get second opinions. I did. I got a second opinion on my doctor, and I’m still with him today. 

Dr. Furst is the ultimate scleroderma doctor. He wrote a book on it and has a doctor’s office in LA. I actually went to see him as a third opinion on my doctor, but he’s also very attentive and will work with you if you can’t afford it. He’s also always researching at UCLA at their scleroderma center. If you live in California and want a second opinion, I’d say reach out to him. 

There are many resources online that you can access as well, but mostly I’d say to see if there are resources in your state. If you can’t find a job, check with your state and see if they have something like what I did with the Department of Rehabilitation, and find that new path or new career. If you apply for disability because you can’t work and they deny you, don’t stop. Keep applying and appealing. It took me three tries to get it. Don’t give up and keep fighting for yourself.

Keep living. It’s hard to do it, but the fact that you are here means that you can.

What advice do you have for those with scleroderma or other chronic illnesses?

My last piece of advice would be to never give up and to always fight. We are given an opportunity daily to do the right thing, be the strongest we can be, and make someone smile. Happiness begins with acceptance, courage, fight, and love.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Luisa Ruiz Kulig

Luisa Ruiz Kulig

, ,

Florida (United States)

LUISA RUIZ KULIG

Scleroderma Stories Issue 5

Luisa Ruiz Kulig 1

Please introduce yourself

My name is Luisa, I’m currently 34 years old, and I live in Florida. I was diagnosed with scleroderma in April 2021. My hobbies include spending time with my two mini schnauzers, going for rides in my little electric scooter for some sun, cooking/baking, and catching up on technology that can help me with my disability!

Luisa enjoying an afternoon walk with her mom and dogs
Luisa enjoying an afternoon walk with her mom and dogs

How did your scleroderma diagnosis come about?

I got diagnosed two years ago, and I started feeling my symptoms about six months prior (in June of 2020). Before that, I had never taken a pill in my life. All I had were stomach issues since my childhood. When I was born, I couldn’t tolerate regular formula and could only drink the soy one. Now, I think that was something that I should have checked out, because I believe the gut system has a lot to do with autoimmune diseases. However, before my diagnosis I had a relatively normal life. 

One of my first symptoms was chronic UTIs (urinary tract infections). I explained to the doctors that, “I’m literally just putting on pants, and I’m getting a UTI!” My doctor said, “you have chronic UTIs.” She would prescribe antibiotics and would tell me that there was nothing they could do. During the pandemic, I then started noticing problems with my wrist not being able to move. I believed it was just minor pains from typing and getting old, but it then progressed into swollen fingers. I thought it was stress, but then I had to get my wedding ring removed by a jeweler because my fingers were so swollen. 

Shortly after that, my knee joints had problems as well. After that last episode, my father – a pathologist – told me to get my immune panels checked. That was back in December 2020. When I finally got my blood test results, the doctor told me that my ANA was positive (a sign of an autoimmune disease), and that they had to check for everything at that point. At that point, I didn’t really understand that my life was about to change forever.

I was immediately referred to go see a rheumatologist. The first doctor I went to see was in February of 2021, and after numerous blood tests she diagnosed me with rheumatoid arthritis. However, she dismissed certain symptoms that I shared with her. For example, I had cuticles that were very thin and had little brown dots. Something just didn’t feel right. I couldn’t bear the idea that the doctor handed me three brochures with different medicines and told me to pick. After that, I decided to get a second opinion. 

I went to the Cleveland Clinic a month later. During my visit with my second rheumatologist, I showed him my cuticles that the previous rheumatologist had dismissed, and he immediately took me to a room full of doctors, asked me to put my fingers under a tiny microscope, and right away he said “I believe you have scleroderma.”

Of course, once I got home, I went ahead and googled scleroderma and thought: My life is over. At my follow-up appointment in April, he said that I had systemic scleroderma – the version that affects the entire body. 

I remember leaving the clinic feeling like somebody had stolen my soul. I didn’t know what to feel. I just felt empty inside. I felt like I was in the twilight zone. The doctor then told me that there’s not any specific treatment for this disease but that the goal was to slow down the progression. Immediately, I felt like my clock started ticking. The following month, I had millions of tests, such as testing my lung capacity, my esophagus, and everything else inside.  

I asked the doctor to check if I needed to see a dermatologist, but he said there was no need. Two years later, I wish I could have started with a dermatologist right away – not because they would change the treatment, but because they have better ways to manage certain conditions of your skin. 

Luisa enjoying a Saturday morning with her family
Luisa enjoying a Saturday morning with her family

What’s the hardest symptom that you have to deal with? 

Firstly, losing my mobility has been the hardest symptom. It’s taken away my independence. I can’t stand on my own, I need assistance for walking, and my knees are like a rock. Not being able to rely on myself has been extremely hard. 

I stopped working in September of 2021, because I couldn’t deal with the fatigue on my joints anymore. The stress that my job was bringing led to flare ups, and I would end the day with a fever. My doctor would ask me, “Can you monitor your fever?” and I’d think “I can’t believe that I went from a full on corporate recruiter to monitoring my fevers.”

At one point, when I was still working from home due to the pandemic, I would work laying on my bed, trying to minimize the pain. I’d take a quick nap in between calls and tell my candidates they could do the interview without video – not because I didn’t want to see them, but because I looked like a mess and couldn’t brush my hair or take a shower on my own. Looking back, I truly don’t know how I did it.

In mid 2021, they asked me to start coming into the office. It was hard because my symptoms were invisible. People didn’t believe me because I wasn’t bleeding or anything. My biggest fear was going outside to use the bathrooms. I would rarely drink liquids during the day so I didn’t have to go. The one time that I had to go outside, I was almost in tears, because I felt like I was going to faint and not make it back into the office. It was really difficult for me. I felt so hopeless and fragile. Almost like my entire world was collapsing in front of my eyes. 

Luisa engaging in her daily walking exercises
Luisa engaging in her daily walking exercises

What treatments or medications have you tried?

I started with mycophenolate in pill form (more commonly known as Cellcept) and 5 milligrams of prednisone. Shortly after my diagnosis, I started losing my mobility really quickly. I had talked to my then rheumatologist, and he said it was normal. It almost felt like he could care less. That’s when I decided to see another doctor. The day of my appointment with the new doctor, she walked in and took a look at me and immediately started working. 

She ordered all kinds of tests, including leukemia. After confirming I didn’t have cancer, she started me on Rituxan infusions every 4 months. This has become a common drug to use for scleroderma. 

Who did you go to when you needed support?

My entire family, including my dogs. They all saw my health decrease slowly and gave me a push to show me that things would get better and I could still live with this disease. 

My family, with their medical background, were a little more shocked than me. I still didn’t understand what scleroderma could do to me, but my dad – who went to medical school – was really devastated. My family is my rock. They have been there since day one. I don’t know if I would still be here without their unconditional love and support. When I started feeling fatigued and started having issues walking, my dad gifted me a transportation wheelchair. However, I was not too happy. I just couldn’t accept the idea of losing my ability to walk. 

It is hard dealing with that loss, and you can become a very angry person. You’re trying to process everything but you can’t. My body had declared war on me, and I just had to keep trying to survive. The first months/years are extremely important to have a loved one advocate for you because, with all the pain, it’s hard to process everything alone. 

Luisa arriving to a doctor’s appointment
Luisa arriving to a doctor’s appointment

How have you adapted your hobbies/interests?

In April of 2022, after visiting the ER twice within a week period, I was hospitalized for the first time. I had lost about 25 pounds, and my stomach was slowly giving up on me. In the emergency room, the doctor told me I had a bowel obstruction. 

That night was a first for a lot of things. They told me they had to put a tube up my nose, to pump my stomach out. For that, they had to give me morphine. This was my first time receiving this kind of painkiller. I came to find out I was allergic, because my chest started closing and my skin was burning. On top of that, the doctor told me I had aspiration pneumonia from the vomiting. 

Five days later, they discharged me. I had conquered my first ever hospital stay. I had to share that story because after that all, I had a big awakening. I left the hospital saying “Screw the sadness. Screw feeling sad for myself or thinking that death is tomorrow, because you just fought for your life.” I decided to start being me again and enjoying things in a different way. Shortly after my husband had left for Chicago to pursue a new career opportunity. In order to keep moving forward, I had to get a third-party aid to help me with my daily activities and needs. Getting an aid was really scary. I had to step out of my comfort zone, and it really pushed me to be more confident and myself again. 

One day after a year of hiding, with the help and encouragement of my psychologist, I decided to make my first social media appearance and show the world who I was and how I look now. There was no turning back. This time was real, and whoever wanted to be part of my healing journey would like me just the way I am. 

Little did I know that I would come across my mentor and the most wonderful person on earth. She was the first person with my same condition that showed me we can still be human. So, I started doing yoga with Rachel (whose Instagram is @sclerodermamama). She reached out to me when I made my first Instagram post. When I started working with her, I could barely lift my head at that point, and she taught me ways that I could work out safely. She helped me rekindle the love I had for sports. 

I also love driving, and I started looking on social media for something that could give me the freedom and mobility I lost – an electric chair. 

Most of all, I love baking. I started wondering if my aides would be comfortable being my “hands and feet.” They were so up for the challenge, and I felt very empowered with their help. 

Long story short, I’m making cookies and dinner for my parents. It’s brought me a sense of relief, that I can still be useful. It’s something that I thought would never come back again. I’ve found a lot of alternative ways to do things on my own. 

Luisa getting back to baking with her “little sous chefs”
Luisa getting back to baking with her “little sous chefs”

What are “tips and tricks” do you have to share with other scleroderma warriors?

I used social media to find a portable pilates set that was super adjustable. Now, I have so many alternative workouts. I also found that there was a dressing stick that could help me take off my clothes and dress myself. 

Also, any kind of pregnancy bottoms, because they’re lower in the stomach and reduce pressure on your stomach. Local transportation, if you apply, can help you take your wheelchair for you without paying a lot of money. A month ago, I found a tool that can help me wash my own face, which is an absolute game changer for makeup.

Finally, technology has been one of my new passions that I love learning about. Specific Bose sunglasses that are actually headphones not only give me the freedom to listen to music and the privacy of conversations, but are also easy for me to use with scleroderma. Also, try getting a Google Nest, because it can help you control your house, give you security, and privacy with your commands. 

Luisa getting custom shoes because she has stiff knees and needs to walk on her tippy toes
Luisa getting custom shoes because she has stiff knees and needs to walk on her tippy toes

What advice do you have for people with scleroderma or other chronic illnesses?

The very obvious one is that your condition does not define you. I really wish I understood this back when I let my condition consume me to a point where it actually made it worse. It is harder said than done, but it is possible. 

Mental health is also super important. Being able to get your feelings out of your chest, talking to someone qualified, is going to make you feel way better than holding it back. Be your own advocate/cheerleader, and don’t be afraid to raise your concerns to your doctors. The relationship has to work for both of you, and if it doesn’t, don’t be afraid to seek a second, third, fourth medical opinion.  

Don’t chase your old self. Take this as an opportunity to start a new chapter of your life. Make peace with your conditions, and find the beauty in every day. Last but not least, learn how to love your body. Embrace it, kiss it, hug it. You are beautiful no matter what. Scleroderma could change your physical appearance but not who you are. Love yourself enough that you don’t need anybody. 

Cheers to not giving up!

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

Evamarie Gilbes-Cole

Evamarie Gilbes-Cole

, , ,

New York City, New York (United States)

EVAMARIE GILBES-COLE

Scleroderma Stories Issue 5

Evamarie Gilbes-Cole 1

Please introduce yourself

My name is Evamarie Gilbes-Cole. I am 53 years old, and I live in New York City with my husband Sean and my son Justin. I’m very close with my immediate family. My family is scattered across the country and internationally, so those that are near are a huge support system for me. I have a lot of forever friends, my “ride and dies,” who have been with me along the journey. 

My fellow scleroderma warriors have also become a part of my family! I have had scleroderma for 16 years. I’m a patient advocate and a support group leader, and I just love helping other people. 

What led to your scleroderma diagnosis?

I was diagnosed in August of 2008, but my symptoms started in the summer of 2007. I was originally misdiagnosed with lupus, and the medication prescribed was not helping.

The funny part is that my actual diagnosis came from an attorney that I worked with. Of course, to protect your job, you file paperwork with Human Resources under FMLA (Family Medical Leave Act). You want to make sure that you can keep your job while fighting an illness. This attorney came by my desk, and he just swiftly said, “You don’t have lupus. You have CREST Syndrome.” I said, “Crest! Crest is a toothpaste. What are you talking about?” I went online, I researched it a little bit and said, “Oh, my! I don’t have lupus, I have scleroderma.” 

I went into his office and asked, “How did you know that?” And he said, “By how your skin looks and how you have all these white patches all over your arms and your legs.” He said that his wife had the disease, and I said, “Wow! One in like 300,000 people have this. Thank you! I’m going to call up my rheumatologist.” 

My rheumatologist at the time was just a regular rheumatologist, not a scleroderma specialist. He dismissed me and said, “They don’t know what they’re talking about. You don’t have scleroderma. You have lupus – your blood work shows lupus.” I continued to see him for a few weeks, and then I started to get a lot of changes. My hands started to show curling, my skin was super tight, and the joint pain was deliberating. My fingers were turning shades of white, red, and purple. I was eventually diagnosed with Raynaud’s as well. I went back to that attorney, and I said, “Does your wife see a specialist, and can I have the name of that person?”
 
At that time, I didn’t know about scleroderma organizations. I also didn’t accept getting sick. I hid myself a lot; I would hide my hands in my pockets or underneath a sweater, I wore big clothes because I didn’t want people to see how much weight I was losing. I went to see that rheumatologist who the attorney’s wife was seeing, and that rheumatologist, just by an appointment and touching me, said, “You definitely have scleroderma.” However, he diagnosed me with limited scleroderma. I saw him probably for about 6 months. I started to get ulcers and calcinosis very early. I was in and out of the hospital for pain management and wound care for my fingers.
 
That rheumatologist referred me to a scleroderma center, and that’s where I met my current rheumatologist whom I’ve been seeing for approximately 12-13 years. He saved my life! He got me on all the right medications, put me in clinical trials, and connected me with foundations nationally and internationally. I joined Facebook and many support groups there. It wasn’t very interactive, but I read what a lot of people were saying about their journeys and I learned a lot there. 16 years ago, there wasn’t a protocol for scleroderma. You just dealt with the complications as they arose. Therefore, I didn’t get baselines of my heart, lungs, or esophagus until about four years into my disease. 
 
So my diagnosis journey is a strange one. But I’m grateful and thankful that 16 years ago when scleroderma was not common knowledge, even in the medical realm, somebody knew something and was able to direct me on the right course to be treated properly. 
 
Evamarie visiting a scleroderma sister in California in 2022
Evamarie visiting a scleroderma sister in California in 2022

What symptoms have you developed since your diagnosis?

My doctor originally gave me nine years to live. But this August will be about 16 years living with scleroderma. So I’m grateful to that one person, the attorney, to whom I say, “thank you – you saved my life.” I occasionally check in on him and his wife to see how she is doing. It still blows my mind, I knew someone who knew someone with this rare autoimmune disease and was able to help me get the proper care and stabilize the disease and get me out of those flares I was constantly in. I’ve been treated by a scleroderma specialist since. I have excellent communication with him. He goes out of his way, whether by phone, email, or in person. Also, I don’t have a lot of hospital stays anymore because I have someone to go to who understands the intricacy of the disease. I have diffuse systemic scleroderma. Over the last 13-14 years, I also was diagnosed with Raynaud’s. I have a lot of GI issues. 

I have erosive esophagitis, watermelon stomach, and gastroparesis. In recent years, I’ve developed Sjogren’s. I have severely curled hands with calcinosis and ulcers. I also have calcinosis in my ears, elbows, feet, eyelids and even my actual eye. I have telangiectasia on my face which is basically spider veins. It’s the red blood clots that you get. They can appear anywhere. I have it mostly on my face and my legs. Of course, I have sclerodactyly, which is the skin damage on my fingers. 
 
A big part is that I haven’t been fully diagnosed. They suspect that I also have mixed connective tissue disease because of my teeth. I’ve had loose teeth for 10 years, and then during COVID-19, my teeth just started falling out of my mouth. Now, I have all fake teeth in the front, and I’m starting to lose the left side of all my teeth. They’re just falling out. So, I need to get more implants and bridges and so forth to be able to eat again. 
 
It’s all because of the scleroderma – all byproducts of what the disease does to you. It’s sad, but I think with good healthcare and the right doctor, your journey is a little bit easier. 
 

What challenges do your symptoms cause?

Definitely, the number one difficult symptom is the hands. You need your hands to do everything. Like I said, my hands are severely curled and have lots of calcinosis and ulcers. They’re constantly infected and I’m constantly going to wound care. I’ve had some severe infections through the years. 

It’s frustrating because just doing the daily basics of life like getting dressed is difficult. I don’t wear many things with buttons anymore. I wear a lot of yoga pants or stretchy stuff because even pulling a zipper sometimes cuts my skin since it’s so thin and so damaged. I have sensitivity to certain fabrics; they flare me up, make me itchy, and hurt my skin. 

The other thing I have to say is my mouth and losing teeth. Even though you can get new teeth, which is not a problem with technology today, it’s relearning how to drink and eat. Your mouth structure changes. When I got these new teeth, I was spitting on people and drooling, and things would fall out of my mouth. It was a learning process. 
 
I would have to say the gastrointestinal issues are another thing. Sometimes, even with drinking water, the heartburn is just awful. I miss Italian food with red sauces and a lot of fruits.
 

What treatments have you tried or found helpful?

For the first year or so, I was on some medication that I can’t remember the name of, but I want to say for half my disease, I was on methotrexate for the scleroderma. Then, I started to realize that the methotrexate wasn’t working. So, I started to take Rituxan infusions which actually were a game changer. They kind of halted the curling of my fingers, the calcinosis decreased, and my ulcers went away. Rituxan was the first treatment that showed a huge change in the scleroderma effects. 

However, it didn’t last long. About two and a half years into infusions, I went into anaphylactic shock, and I had to stop taking the medication. It was very scary. I don’t remember part of it. They had to EpiPen me, and they rushed me to the hospital. It was actually the first time I went to an infusion by myself that the anaphylactic shock happened. They had to halt the infusions completely. 

Right after that, my health declined again, and I was put on CellCept. I’ve been on it since then. I will say the CellCept softens my skin. I have a lot more skin to pull now, but the ulcers and the calcinosis came back. So, we know that biologics help me, but there aren’t too many biologics that are approved for use in scleroderma treatment. 

I was on a lot of different medications early on for my GI issues. Now, I take Dexilant. But, I have to say that a change of diet was hugely significant in helping my GI symptoms and my gastroparesis and so forth. Keeping a journal and going over it with my doctor to learn my trigger foods was huge. Like I said, I took various forms of medication for GI issues: omeprazole, Nexium… At one point, I used to have to take six pills a day to control the acid reflux. Now, I only take a pill when I feel it starting and I need it. When you live with a disease for so long, you automatically know when something’s going to spiral. If I eat something, bang! Within seconds I can say, “Uh oh, not good.”
 
I take Nifedipine and Viagra, vein dilators, to help with my Raynaud’s. I also have high blood pressure so I take Edarbi for that. And I manage my pain with oxycodone when needed. However, in the past couple of years, since medical marijuana became legal in New York, I take less oxycodone and I’ve gone more on the cannabis route. I do a lot of edibles, and I bake and cook with it as well as make my own butter with it. The use of cannabis in pain management has been a huge game changer for me.
 
I had laser surgery around 2019 to take care of my watermelon stomach; I was bleeding internally. I am currently in the process of hand surgery. I’ve been meeting with various micro-hand surgeons. I need a four-part hand surgery where my hands need to be fused, a release of the tendons in my palm and wrists, and removal of scar tissue and calcinosis. I’m not a candidate for knuckle replacements or other procedures because I have so much scar tissue and damage to my joints. There is not much they can do except open them up like a rainbow to give me better operation of my hands in my day-to-day life. 
 
I’ve also participated in several experimental trials. It’s important to help science. I’ve done one infusion that has not been FDA approved yet, and I have participated in a lot of digital ulcer trials for medication that supposedly helps calcinosis. The infusion was wonderful. I did feel better on it, but unfortunately it’s not FDA approved. None of the pill trials have ever made a difference in my journey overall.
 
Evamarie receiving an infusion
Evamarie receiving an infusion

How do scleroderma-related expenses impact your life?

It’s an excessive hardship and strain. You have to remember I was the money maker in my family, and I had the better insurance. I can’t just go out and do something in my life because I always have to budget whatever plans I have. I always have to keep some extra money for emergencies.

I’m on the Affordable Care Act, because my husband works for a union. So, you’re forced to see the doctors that they cover. In order for me to get the proper treatment, a lot of times I have to go out of network, and the co-pays are higher. A lot of testing is not covered, so it’s a lot of out-of-pocket expenses. Dental plans in the United States are not good; they pay the minimum. 

For example, in 2022 I had about $17,000 of out-of-pocket expenses. I’m not only paying for insurance, because that doesn’t cover everything. The cost is hard. I also spend a lot of money on things I need to help me get through my days, like certain devices such as special jar or bottle openers, special utensils that have big handles, things like that. Basically, I collect SSDI (social security disability insurance) to pay medical bills. That’s basically what it comes down to. 

I think that, overall, insurance companies have failed people with chronic illnesses. As an advocate, I have been advocating for better coverage for people with chronic illnesses. Not everybody fits into the same puzzle piece. Governments have to get off their high horse and start to really examine overall what’s happening in our countries and make sure that everybody’s entitled to good healthcare. 

When you have to pay all that money to be able to live, it affects your home life and being able to do things with my husband or my son. We become prisoners of our own home because we don’t have that extra money. Every time I plan to meet somebody, it takes a full year for me to squirrel that money away to be able to do it. Sometimes, I have to reach out for outside resources or ask family, “I really need this time away. I need a vacation. Will you help me?” Most of the time they do, which I’m eternally grateful for. It is very hard and straining. My husband’s insurance is changing again, and with even less coverage. 

I’m now starting to research and look into state insurance, Medicaid, or disability insurance because I’m worried about not being able to keep a roof over my head because so much is going to medical care.

How has scleroderma impacted your career?

Scleroderma has had a huge impact on my life. I lost my career. I was a paralegal for 26 years prior to my diagnosis. I worked with very powerful attorneys in large international law firms in Manhattan. I used to have to travel a lot, but I couldn’t travel anymore because I didn’t have the energy. My energy level was so low and my fatigue so high. You could only reduce your hours so much before it impacts the work quality. I will say that the firms I worked at when I was ill were very accommodating. They gave me whatever I needed to try to do my job. But when I couldn’t work at least 3 days a week, I knew I needed to step down. On the other hand, it also gave me the opportunity to be a housewife and there for my young son. I found a new purpose and passion in my life with Scouting and Parent Associations for my son.

How has scleroderma affected your relationships with friends and family?

The majority of my family is very supportive. Unfortunately, I don’t have a lot of family near me, but those that are near me always accepted me. Actually, when they heard I was sick, they all jumped on the bandwagon and started to research what scleroderma was and how it was going to affect me. Sixteen years ago, they gave me a life expectancy, and for many years my mother was worried that I would go to sleep one day and not wake up. It affected my mom deeply. She thought she was losing her child. But my family was super supportive. They were always around if I needed help to go food shopping or whatever – they’d step to the plate. 

Friend relationships didn’t go all so well at the beginning. Yes, there was always support from my closest friends, but I truly believe that if you don’t have a family member struggling with this disease, you don’t really get it. I just think that some of those people gave up on me, and they didn’t want to be part of my journey. Maybe they couldn’t accept it on their own, or maybe they couldn’t handle what they saw me going through. But whatever the reason is, there are no ill grudges. Instead of having hundreds of acquaintances, I have an extraordinary small group of “forever” friends that I am blessed with. These “forever” friends have become my “ride and dies.” I could just message them, and one of them will show up to the plate to take me to doctor appointments, pick up medicine, or just hold me while I cry on a bad day.

In life, they say that you have people in your life for a reason or a season or a lifetime. I’ve been blessed to have all three. I just go with the flow. If you’re willing to be there for me, I accept you with open arms, and if you can’t handle it, I’m okay with that too. But if there’s a way to change your mind, listen to me and let me help you understand. I am grateful for those who want to be educated and learn. 

Evamarie with her ride or die friends
Evamarie with her ride or die friends

What is it like to be a mother with scleroderma?

My son was very young when I was diagnosed. He was only five years old. Believe it or not, my son is more rare than I am. He was born with birth deformities and some other rare diseases. I’ve always wanted a child, and prior to having my son, I had about eight miscarriages. And then after my son, I had two miscarriages. I was told that I could get pregnant easily, but maintaining the pregnancy was tough. In later years, I was told by a gynecologist that it’s possible that the scleroderma gene caused these issues. Of course, no research on that statement, but that’s what I was told. 

So when my son was young, I wasn’t able to run after him like you need to with toddlers. It was not easy. I wasn’t able to teach my son how to ride a bike or to rollerblade. My temper was very short with him constantly because the pain was too much. I look back and sometimes think I was a bad mom because I couldn’t do what a healthy mom could do with their child.

I want to share a little story about my son. I don’t think my son realized I was sick because we always hear, “you don’t really look sick,” – if you look at my face, I don’t look sick. But in this story, he was about nine years old, and I was on my journey to finally accepting that I would have to be put on disability. 

I picked him up from school one day and he grabbed my hand to cross the street. I was having a bad day and said, “Baby, hold my wrist.” I used to tell him that because grabbing my wrist didn’t hurt. He looked up at me and asked, “Mommy, are your hands ever going to be normal? Are they going to fix themselves? Or are they like this for the rest of your life?” 

I think at 9 years old, he finally realized that his momma was sick. It broke my heart. I started to cry a little bit, and I said, “It’s not the end of the world, baby. Your mom’s just going to have special hands.” I remember him coming home and saying to his dad, “You know mommy’s hands are going to be like that forever?” 

But my son is extremely compassionate. In my worst years, before I got the proper medicinal treatment, my son was a huge source of support. He had to grow up a lot earlier than needed. He helped me get dressed. Sometimes, he would have to help feed me and so forth. He was my main caretaker whenever home because my husband had to work. And for my husband, it took him a while. It changed his personality. It’s hard to hear that your wife is sick, but now he gets it. Both of them are by my side on my journey. They participate in all the events, and they support me whenever I have things to do. I’m grateful and blessed that they’re there for me. 

Scleroderma definitely had big impacts on my life. They changed things for me and made things more difficult. Also, when you lose your career, it becomes a financial and marital strain in your relationship. But with time and learning, everything of course works itself out. I’m still married 28 years later. My son is now 20 and thriving in college. Even though the decisions I made along the way weren’t easy ones, I truly believe that things happen for a reason and work out in the end.

Evamarie with her husband, Sean, and son, Justin
Evamarie with her husband, Sean, and son, Justin

How do you feel when people tell you that you don’t look sick?

I hear quite often that I don’t look sick, until they see my hands or touch my skin. To strangers, I sometimes say back at them when they say I don’t look sick, “Well, that’s a stupid comment. How could you just judge on appearance?” I take it as an opportunity to educate people. I’m one of those people who will talk to the cashier in the drug store. I will talk to a complete stranger on the bus or the train. That’s my personality. 

And when people see my hands, automatically they think it’s rheumatoid arthritis or just regular arthritis. They don’t really associate it with scleroderma. I used to get insulted when they say, “Oh, you have arthritis.” No, this is not arthritis, this is a whole lot more. 

Maybe at the beginning I got mad but not anymore, because scleroderma is still not really known or understood. I know it’s not an easy disease to diagnose or see on an individual. At the beginning, 16 years ago, it was nothing like it is today. It was harder back then to try to get that recognition of being sick or being chronically ill. Most people didn’t see that. 

Traveling through the airport or parking your car in a handicap spot – do you know how often I get yelled and screamed at, “Why are you parked there?!” I’m like, “Look at my license plate, it’s handicap. Back off! Would you like to see my hands? Would you like to see that my body freezes and shuts down in the cold? I can’t walk far to get into a store or even carry things.” 

There have been a lot of handicap parking wars in my life in the past 16 years. I don’t stay quiet. Sometimes people apologize, and sometimes they leave nasty notes on the car. People are so absorbed in their own lives sometimes that they don’t recognize what’s going on around them. I chalk it up to selfishness and ignorance on their part – but the people who care will ask, and the people who are not interested, I just let them keep on walking.

I think one of the big problems is that nobody has really stepped up to the plate to give us that media coverage, whether it’s domestically or internationally. That media coverage is not there. Overall, our organizations are not wealthy and we don’t have a lot of backing, grants, or research; we’re not recognized overall. The awareness is more seen on social media but not on TV. No organization has got that huge sponsorship that’s needed to give us that boost. 

Scleroderma United doing these stories gets that information out there, and hopefully somebody will come across this page or on social media and say, “Oh, wow! I never knew about this disease. Maybe this is what this person has.” Maybe they will be able to recognize it in somebody else.

Also, I think schools like colleges or universities should work to give that knowledge to their students, have people come to universities to share their stories or show what they look like, and have more interprofessional meetings. I bet you, 16 years ago scleroderma wasn’t even mentioned in classes, though I have heard that now it’s being brought up a little bit more if you’re going into medicine or nursing. However, that still only comes with awareness; if scleroderma is being taught about in a university somewhere, it’s probably because somebody in that university knows somebody with scleroderma. That’s why we need more people to advocate and meet with more doctors to try to get them to do research and share it with their students, even if it’s basic knowledge.

Evamarie’s hands
Evamarie’s hands

Could you please share more about your connection with the scleroderma community?

My fellow scleroderma warriors are my closest friends now – they’re family. I love meeting other people with the disease, the doctors treating us, and those passionate in supporting awareness of the disease. I’m a support group leader, so of course I usually meet people in person. 

I’ve met people all over the United States and internationally. I know people everywhere, and I just love to see them at events. We talk on the phone, text, and call each other. And when something’s going wrong, other than my husband and son, they’re usually the first people I go to because they’re the ones dealing with scleroderma. They understand. I don’t have to explain too much because they just get it overall. 

I actually travel across the country with people I met in the scleroderma community and stay with them and do these little mini-vacations for a week at a time. If somebody invites me to spend time with them in their state, I put it on my list and say, “Next time I plan a vacation, I’ll hit you up.”  

One of my goals is to stay with a scleroderma friend for more than 24 hours in every state of the United States. So far I’m about 12 states in, so I have a lot of states to go. That’s still quite a feat, considering I technically started my journey eight or nine years ago. I just love being with my scleroderma family, and I’ve learned so much from people who have shared their stories. 

As a matter of fact, I looked at a couple of Scleroderma Stories interviews and was so excited to see so many people that I’m actually very close friends with. It’s wonderful, I just love it. I’ve always been a social butterfly, and I always had a lot of friends prior to being diagnosed. But through the years, I lost a lot of friends. That was because I kept on canceling or I didn’t feel good, and I guess after a while they just stopped asking and we grew apart. 

But I love my new family, and I know that they understand when I run out of spoons (energy)!

Evamarie Gilbes-Cole 7

What are your interests or hobbies?

Traveling and hoping to meet somebody in every state of the United States is one.

I also love to garden. It could be flowers or vegetables. I like to just be outdoors, especially when the weather is good in New York. But I have to watch how much I do and not overdo it because, of course, the involvement of the hands limits my activities. 

Also, when the weather is good, I walk about five miles a day to keep moving the joints. When the weather is not so good, I live in a four-floor house, so I do a lot of going up and down the stairs at home.

I love word games. I play a lot of word games online. I feel that it keeps my mind fresh for vocabulary. I love to read a lot – not only research studies about scleroderma. I love historical fiction and murder mystery stories. I do arts and crafts. I used to do a lot of it and I used to do wood carving and painting. I still do things occasionally when my spirit is high and I’m feeling good. But it’s hit or miss with that.

I just love the beach, so as soon as the beach opens, my feet are in the sand and I’m enjoying that nice heat from the sun. Yes, lots of sunscreen, but heat is a wonderful thing. Most of us are deficient in vitamin D, so being in the sun helps with that.

I do a lot of meditation and some yoga. I call it scleroderma yoga because I can’t make half of those poses. I do my own version of yoga to just stretch. Meditation definitely helps to relieve some stress and puts me in a better mindset.

Evamarie Gilbes-Cole 8

Have your daily walks and stair-climbing helped you manage symptoms?

Absolutely! There’s a quote, “A body in action is more flexible.” I used to be kind of a couch potato. When you work, you come home and you just sit down. But I’ve noticed that movement keeps my energy a little bit higher than normal and also keeps me more mobile and my skin more flexible. So yeah, absolutely moving helps. 

Don’t get me wrong, there are days that I won’t even move out of bed. You listen to your body, and you stop. For the most part though, those are the things I do to keep myself going.

My son was young for the majority of my early diagnosis, so he kept me on the move when I needed it. I got involved with boy scouting because he was a boy scout. I would do events with him – camping and so on. I think having a child actually kept me mobile; maybe that’s why I think it’s not so much of a struggle for me to continue walking and moving.

What is your mindset when approaching new things?

I still jump into things if I know that I can manage them. Physical things I think about a lot because, of course, you need your hands a lot for some physical things, and mine don’t work properly. So I pick and choose. I know what I’m capable of doing and what I’m not. 

Sometimes, I wish I could do everything and be a healthy person – but I accept it. Having scleroderma is life-changing. I know in my mindset that I can’t do everything a healthy person can, but it doesn’t stop me from doing things. I am still extremely involved and do a lot of things. I still even clean the bathroom! My husband does most of the housework, but I’m still able to do a lot on my own. Not as much as I’d like, and I have to space out what I do in order to have the energy for it, but I’m willing to try anything at all. 

The diagnosis of scleroderma didn’t make me stop living. Although life is different, it’s still a life I love and appreciate, and I’m grateful to still be alive. We have to relish in the good days. Even if you’re having a bad day, you say, “Okay. I survived every bad day in the past, I’m going to survive this day too. I just hope tomorrow will be a better day.” I try not to dwell too much in the pity party. Those days of pity partying are over. You need to take action in your own life. If you want to be happy, you’re going to find a way to be happy. If you’re going to stay miserable and feel horrible every single day, you’re never going to get better. It’ll destroy your spirit, your health, your relationships. That’s my thought on it.

Evamarie receiving the Proclamation for World Scleroderma Day from NYC Mayor Adams
Evamarie receiving the Proclamation for World Scleroderma Day from NYC Mayor Adams

What’s something you’ve learned over the years that you wish you had known when you were diagnosed?

At the beginning of my diagnosis, I wish I knew more about the organizations out there. That probably could have helped a little bit on my journey. But some of the advice I have is: Don’t give up hope. Listen to your body. Don’t focus on what you can’t do, but what you can do. And always be kind to yourself. 

My biggest thing is to be your own advocate, whether it’s within the medical field, in raising awareness, or anything. Our community is small compared to other chronic illnesses, so you need to be your own voice. You need to get out there and say what’s bothering you and what you need, because it won’t be handed to you. 

Because scleroderma is unique in every patient, you know your body the best. Don’t stay quiet. If you see something out of the ordinary, discuss it with your doctors. Call your doctors, and reach out to your community whether it be privately or in a group setting. Ask questions because there are a lot of us who’ve been on this journey a long time. We may not have the answer for you, but we might know somebody who will have an answer to guide you properly.

At first, I think people don’t want to accept their disease, and they have a hard time. Even though there is more knowledge now than there was years ago, it’s still a scary experience. I hid for 7 or 8 years after my diagnosis, and then I finally accepted it. You truly can’t go on with a chronic illness until you really accept it. Once I accepted it, I stopped feeling sorry for myself. I said, “Okay. Now I’m going to go out there, and I’m going to start helping people,” because nobody really helped me with my journey, maybe because I didn’t really get involved. I don’t want people to go through what I went through – feeling very alone, very angry, and giving up hope. I don’t want people to feel like that. Once I accepted the disease, it changed my life.

Having scleroderma is not necessarily a death sentence. There are ways of treating our issues in association with the disease, and treatment can halt the disease. Like I said, they told me I had nine years to live, and I’m here years later. 

So don’t listen to that. Don’t get yourself sick like I did when I was first diagnosed: “What do you mean I’ll live nine years? I’m not going to see my son graduate high school or go to college? I’m not going to be a grandma?” I got myself sick for nothing. I don’t want others to feel like that. 

And when somebody tells you that you don’t look sick, that is your opportunity to share your story and tell them what scleroderma is doing to you and your body. 

I can say I would trade scleroderma for every wrinkle in the world, but you know what friends of mine say to me? “Oh, my God, I’m so jealous. You have no wrinkles. You don’t look 53, blah, blah, blah.” And I say to them: “My skin could sag to my ankles and I’d be happier, because living with chronic pain every day is not fun.”

What are your goals and dreams for the future?

One of my big goals is to spend quality time, at least 24 hours, with scleroderma patients in every US state. Another goal is to continue to advocate and raise awareness. I would like every state and every region internationally to know what scleroderma is. I want to turn all these regions teal (teal is the color representing scleroderma). And maybe one day, I’d meet with some radio or media to do a commercial to get more funds and grants, raise awareness, and do advocacy to hopefully find a cure in my lifetime.

Even though I don’t have a paid job, I’m going to continue volunteering to help others. I think I was meant to get scleroderma to stop that hustle and bustle of New York City life and soften up because, since my diagnosis, I’m a more compassionate person. I’ve slowed down, and I make sure to breathe and find self-care, to make every minute that I’m here have purpose. 

What kinds of advocacy work are you involved in?

I’m very involved in organizations within the United States. I actually was the National Scleroderma Foundation’s Advocate of the Year in 2022. New York City had no backing, and I was able to get support from the Mayor of New York City and my local Senator. The Helmsley Building and Pier 17 were lit teal to acknowledge scleroderma awareness.  

This year, I was named National Volunteer of the Year and also received the first Jacob Davila Leadership Memorial Scholarship. Jacob was one of my mentors. I learned so much from him. 

I’m very involved in federal advocacy with my Congressman and local politicians to gain support for bills and grants. Currently, I’m working on the Department of Defense bill, which is a $5M grant to go towards scleroderma medical research. So basically, if there’s any way to bring knowledge of the disease or to help our community in any way, I’m there for it. In addition, I also advocate for medication to be approved. One day, I hope I can actually go to congress and tell my story about the lack of approval of medications, especially biologics, that help our disease, and be one of the people who make a difference to get it approved.

Anything you’d like to share?

I want to tell my community to keep up the fight. Being a part of several groups on Facebook and Instagram, as well as signing up to be with every organization that supports the scleroderma community can help your journey. 

Through these networks, you can learn a lot and meet people which could be life-saving and life-changing. 

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

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