Art

September 22 2023

Aneila Vargas

sclerounited_ppavrw Issue 5 Art, Florida, Puerto Rico, United States

Clermont, Florida (United States)

ANEILA VARGAS

Scleroderma Stories Issue 5

Please introduce yourself

My name is Aneila Vargas Pagán. I am 28 years old. I was born in Puerto Rico, but I moved to Florida almost 6 years ago. In May, I graduated with a bachelor’s degree in Health Services Administration. I also love to draw!

Aneila’s friends flew from Puerto Rico to Miami to spend her birthday with her! They visited Superblue Miami Museum together.

Could you please tell us about your journey toward being diagnosed?

The first symptom I noticed was two instances of skin discoloration — one on my hand and one on my body. I noticed the skin on my fingers would break, peel, and bleed. Because I worked as a barista at the time, I thought it was because of the exposure to chemicals or because of the hot and cold temperature difference. Not thinking much of it, I just started applying creams at night and wearing gloves.

Then, I noticed I was sleepier than usual and that I was developing patches on my face that resembled rough crocodile skin. At this point, my family told me to see a doctor, but their diagnosis was that these problems were stemming from me being overweight. I ended up visiting three primary care centers. After some tests on my liver, the third doctor diagnosed me with fatty liver disease.

The diagnosis didn’t solve any of the problems I was feeling, and at this point, my hands also became extremely bony, so I finally visited a rheumatologist. She sent me for a test in California that checks for 60 different types of autoimmune diseases, which is finally when I got my scleroderma diagnosis. This July, it will have been three years.

Alongside scleroderma, my doctors diagnosed me with polymyositis, which, broadly, is irritation and inflammation of the muscles. This explained a lot of the pain and fatigue I was feeling. It also was causing the fatty liver misdiagnosis; my muscles and sinuses were inflamed, not my liver!

What treatments and medications have you tried? What has worked for you?

I am currently on Cellcept. It is normally prescribed to patients who undergo organ transplants, which is why I was initially nervous to start taking it. It lowers the patient’s immune system, which was tough for me since I got COVID-19 four times during the height of the pandemic.

I take oral steroids for my polymyositis. It controls cortisol levels and slows down muscle inflammation, but its side effects include weight gain, especially around the face, creating the term “Moon Face.”

I also take Plaquenil to regulate the pain and inflammation in my hands, which is caused by arthritis. Finally, I was diagnosed with Raynaud’s syndrome, but living in Florida has kept it under control. I was prescribed Amlodipine, which is a medication for heart conditions, since it deals primarily with blood flow, but I have not had to take it.

Sometimes, changes in my diet or environment can cause a flare-up in my symptoms, so my doctor will raise or lower my doses accordingly. Overall, my treatment plan has definitely improved my symptoms. The medication for polymyositis, especially, is really effective. Sometimes, there are days when I forget about the pain.

Aneila’s mom and younger brother visited her during Christmas.

What lifestyle changes have you made?

Being from Puerto Rico, I used to practically live on the beach. The high sun exposure, however, means I can no longer go because CellCept heightens my risk of skin cancer. I don’t think I’ve gone in almost two years. I have also modified my diet. I steer clear of gluten, since it seems to aggravate my symptoms. Being in large public spaces is also difficult because I am much more exposed and prone to get ill from someone who may just have a small cough.

I have also started to lift weights — nothing crazy— to keep my muscles active, especially because of my polymyositis diagnosis. Basic things like opening bottles, as well as larger things like contributing in the house, have become harder. I often have to communicate to my partner that I am low on energy, which is why I struggle with these things.

How did you manage your mental health and emotions following your diagnosis?

During the first year, I was very emotional. I was especially angry at myself, and I would deprive myself of joy. I felt like I didn’t deserve to enjoy life anymore or that by making time for others, I would only hurt them more in the long term if I passed away. Over time, I have had to learn how to enjoy life and simply be more caring towards myself.

My drawings posted on my Instagram page also represent exactly how I am feeling at that moment. It’s like satire. I’m making fun of myself, which becomes an outlet for my feelings. For example, one drawing was a before and after of using one of the oral steroid medications that made me gain a lot of weight, while other drawings are more fun or encouraging, which reflects a time when I felt great about myself.

The logo for Aneila’s instagram page, @agirlwithscleroderma

What changes to your mindset has your diagnosis brought about?

My initial diagnosis was actually quite defeating. I struggled to find support groups. There was information, such as on WebMD pages, but no one to connect with, which made me feel worse. I felt a sense of desperation to meet someone else that would understand being diagnosed with something that most people have never even heard about.

This prompted me to create the Instagram page called @agirlwithscleroderma. I already love to draw and hadn’t been able to for a long time, so the initiative pushed me to find a creative outlet. After posting my first few drawings, random people would stumble across the page, giving me organic chances to connect with them.

The first year was mostly a grieving process. I thought a lot about things I could do in the past that are inconceivable now or about the side effects of my medications, which limited my perspective significantly. Ultimately, I leaned into my family and my partner to get an extra push. After speaking with other scleroderma patients, however, I feel really lucky that I feel relatively good on a daily basis. So many people that I have met cannot properly manage their symptoms or were diagnosed years after the onset of their symptoms. Being grateful for where I am has helped me keep my positive mindset.

How have you connected with the online scleroderma community?

A woman named Lauren from the Scleroderma Foundation reached out to me after seeing my art on the Instagram page. Speaking to her was my first real chance to share my story. She connected me to the Foundation’s therapists and counselors; different Facebook groups, such as for caregivers or for diagnosed patients; and the Foundation’s Florida chapter, which held Zoom meetings every once in a while.

Tell us more about your Instagram page, @agirlwithscleroderma!

When I first created the page, I never intended to show my face. You’ll see there aren’t any pictures of me posted. I think I was coming from a place of shame. I didn’t look like many other scleroderma patients. I figured I would never have to show my face if my drawings could convey how I was feeling. Now, I am leaning towards showing my face on the page because I am more aware of the fact that the aggressive nature of the disease means it affects every patient differently.

Then, people who were not diagnosed but were experiencing key symptoms started contacting me. It was quite overwhelming. They would ask, “Who did you see? What medications are you on? Which ones should I take?” This desperation that others felt was exactly what I initially felt. For them, finding someone experiencing what they were going through was a foot in the door towards diagnosis.

I have a lot of Spanish-speaking followers, which I take great pride in. The content is quite limited for this community, so I can play a small role by translating information for patients and families.

Aneila uses social media to raise awareness about scleroderma, provide information, and share her journey with the disease.

What are your hobbies and interests? How did your diagnosis affect your level of engagement with these?

I love reading, watching a whole variety of shows, all kinds of drawing and related art, and growing plants. I’m a total homebody! When it comes to art, I’ll do more than just drawings. I can edit pictures, create clay sculptures or objects, and a lot more!

Because scleroderma affected my hands, I thought that with the resulting arthritis, I wouldn’t be able to use my hands in the same way as before. Luckily for me, however, the medication kicked in early in my treatment plan, which means my hands have been in pretty good shape so far. Some days, there is more general pain, but I can compensate for that by taking a break from the art for some time until I feel strong enough to continue.

Although Aneila loves physical books, she also enjoys reading on her Kindle. She annotates her favorite quotes and parts of the books.

How has your diagnosis affected your relationships with loved ones?

My cousin was the first person who told me to go see a doctor after I started showing symptoms, but my entire family has been incredibly supportive, despite most of them living in Puerto Rico. When I had to get my surgery, for example, and I mentioned it in the family group chat, everyone said “WE’RE getting the surgery.” That level of support is unreal.

I am also engaged to my partner of five years, who I met at the law firm we both work at. He has definitely been a rock for me. I feel like something that is really important but isn’t often talked about is how a diagnosis can affect your partner. He basically went through similar stages of grief that I did. It’s very challenging for them to understand that their partner may not always look and feel their healthiest. He has always picked me up when I cannot do the things I normally love to.

I didn’t realize this before, but my diagnosis affects my ability to get pregnant. I am currently considered high-risk. I am able to conceive, but I would need to be off medications for 3 months before trying, and then the entire pregnancy as well as breastfeeding journey. It would put a huge weight on my health.

Aneila and Jerome are engaged! Jerome surprised Aneila with a beach proposal in Sarasota, FL because he knows how beaches hold a special place in Aneila’s heart!

What about your ability to continue with school/work?

I work from home, which has been one of the biggest advantages throughout my journey following my diagnosis. If I don’t feel good one morning, I can work from the bed, be there all day to rest, and still get all my work done.

Being busy with school helped distract me from how I felt about my diagnosis. At the time, I was going through my summer semester, and I didn’t stop to process or acknowledge my feelings. In the moment, I was able to grieve that way, although in hindsight that may not have been the best.

Often, I was really exhausted. I had work, online classes, and homework, along with helping around the house and spending time with my partner. It felt like everyone else had a 24-hour day, while mine was much shorter. I would get tired much quicker.

What advice do you have for other scleroderma patients?

Often, patients don’t have proper information regarding providers or centers they can go to for help. They assume they have to go to places approved by the National Scleroderma Foundation. My current doctor, however, is not listed under that designation, and my care plan is truly the best it can be for me.

People who are on waiting lists for appointments at the Mayo Clinic or for months out from the status quo cannot afford to take the risk of waiting that long. I try to direct patients to regular rheumatologists while they maintain their positions on these waitlists so they are still at least being regularly seen in the meantime. Another hack for me has been Cost Plus Drugs, which Mark Cuban from Shark Tank created! It has helped me afford the medications I am currently on. All I need is a prescription, and appropriate refills are taken care of.

Aneila and her closest cousins Valeria, Leslie, and Vanessa, who she calls her sisters, celebrating Leslie’s miracle baby.

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

July 24 2023

Elodie Allen

sclerounited_ppavrw Issue 4 Art, England, Fitness, United Kingdom

England, United Kingdom

ELODIE ALLEN

Scleroderma Stories Issue 4

Photo: Rebecca Hudson, www.aerialartsphotography.co.uk

Could you please tell us about your journey?

Elodie Allen is my name. Paris is where I was born and raised. My spouse is English, but I am French. In 2009, we relocated to the United Kingdom. I was 28 years old when I was diagnosed in 2012. In England, I was not diagnosed. I’d had it for around three years before the diagnosis.

Then, I had to return to Paris, where I told the local doctor I grew up with about my symptoms of digital ulcers and acid reflux. He told me I had scleroderma. When I returned to England, I told the physicians, “You haven’t read the symptoms for three years, but a French doctor figured it out!”

After visiting the hospital and undergoing several tests, they confirmed the diagnosis.

Can you describe the symptoms leading up to your diagnosis?

There were three primary issues. First, my fingers become blue due to Raynaud’s disease, and I have digital ulcers that emerge and stay there for months. It’s really painful, and the cold weather aggravates it.

Then, eating caused aches due to acid reflux, but it’s much better now that I’m on GERD medication. The third issue is that my scleroderma has radically transformed some places of my face, the red patches on my face, and how I look.

How did you feel when you were told that you had scleroderma?

I’d never heard of it before, so I had no idea what it meant. But it was a relief since the doctors had told me for three years that I had nothing, yet I could feel myself changing physically. I used to lose my nerve in front of others because I couldn’t play the piano because of my weak fingers. I had read a little about scleroderma, and it was terrible to learn that there is no treatment.

For the 3 years preceding my diagnosis, I felt irritable and exhausted. I was always an active person, but then I started sleeping for long periods of time and convinced myself that I was really lethargic, but it was all due to scleroderma. I wish I had learned about the diagnosis sooner.

What symptom is the hardest to deal with?

The weather and food can both cause significant disruptions in my life. When it’s cold outdoors, my fingers inflate, and I can’t use them. I was terrified that I was going to lose my fingers due to how uncomfortable it was. My digital ulcers have had to be surgically removed.

How has scleroderma impacted your relationships?

People believe that I was always on a diet, but the truth is that I have to eat properly or I’ll have a flare-up. I lost weight before my diagnosis since I didn’t recognize what I had and didn’t eat properly.

I don’t want to go out with anyone because I don’t want people to continuously comment on my skin or the fact that I don’t eat at lunch or wear gloves.

I still lose my patience at work because I wear gloves and people say things like, “Isn’t it an exaggeration because it’s not that cold?” and stuff like that, and I’m thinking, “Well, actually, you don’t know me. You have no idea why.” In the mornings, it’s extremely cold in the UK, so I’m angry and in discomfort.

What are your hobbies?

My physicians constantly warned me that scleroderma might harm my heart, so I avoided strenuous activity. I never wanted to avoid activity because I’ve always been fit, but I still do some mild exercise. When I underwent an operation, there was a possibility that I may lose my hand, so I said screw it and started doing circus arts and sandy clay stuff.

Could you please tell us more about your circus arts experience?

I began with trapeze and then moved on to ropes and swans, which helped me improve my perspective on things. And I fell in love with circus arts; I also obtained certification for training students. I have found a community who has helped me with my skin and my fingers. Because it’s an indoor community, it has always helped with my conditions.

Every time I get a chance, I always go and work out, and that makes me feel better. In addition to my goal of starting to work part-time soon, I want to do as much circus art as possible. My spouse and I are converting our garage into a studio so I can train as I want.

Elodie on the flying trapeze

What medications have you tried?

I’d been prescribed a blood thinner, but it also worked as an antidepressant. And since I was taking medication, I got into a vehicle accident on my way to work, so I stopped them. I now only take omeprazole to treat acid reflux.

Everything is covered by national insurance in the UK, which is a big support. We’ve had the NHS since the 1950s, and I have to pay less than ten pounds for medications; the medical system is superior to that of the United States.

Are you in any online scleroderma communities?

I am, indeed. I belong to a few Facebook groups. The groups are helpful to discuss key topics and ideas, such as how different clothing brands, for example, can help me stay warm when things flare up.

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

My advice is that if you’ve got the symptoms of some illness and you think the counter drugs don’t work, it probably means that you’ve got something a lot more serious than what you initially think you have. And if you or anybody else notices a decline in energy or suspects anything is wrong, get medical attention immediately.

Anyone suffering from one of these chronic, undetected illnesses is brave. It is not easy. Don’t allow anyone to tell you that you can’t do anything, even if it’s only a 10- or 20-minute stroll or some easy yoga. Even if you believe you aren’t skilled enough to work out, keep going since it will benefit you in the long run.

July 24 2023

Jojo Santos

sclerounited_ppavrw Issue 4 Art, Food, New York, Parent, Photography, United States

Queens, New York (United States)

JOJO SANTOS

Scleroderma Stories Issue 4

Please introduce yourself

My name is Jojo! I’m originally from the Philippines, but I moved to New York City in 2007. I am the sole parent of three intelligent and perceptive kids. It has always been my desire to work as an event chef. I have interstitial lung illness as a result of my Scleroderma diagnosis in 2015. However, I am an upbeat person with a free-spirited attitude who loves to cook, exercise, arrange flowers, blog, and travel. I enjoy doing crafts and painting.

What were your earliest symptoms?

My earliest symptom was Raynaud’s while I was in high school in the Philippines. My fingertips always turned purple after taking a shower, but the pain subsided, and they eventually went back to normal. Of course, in America, this happened too, especially in wintertime. But, I didn’t pay attention to it. I didn’t know it was a disease. I also had a pump to treat my asthma episodes in PE class at school.

When were you diagnosed?

I was 25 weeks pregnant with my third kid when I received the diagnosis in July 2015. I was a babysitter at the time. I had picked up the two kids I was taking care of, and we were walking in the park. It was really hot, but my hands were turning purple! I called my husband and told him I was going to the hospital because my asthma was making it difficult for me to breathe and my hands were going purple. Now, after everything, I know it was just scleroderma mimicking asthma.

Since I was 36 years old, my pregnancy was already a high-risk situation. My kid was in the care of physicians who were worried I’d lose him. However, he is my miracle child. I was in the hospital for about two weeks; every day, a different doctor visited me. My lungs were only functioning at 50% capacity and were already honeycombed. My physicians advised me to end the pregnancy since I was unable to take the meds because doing so might harm the unborn child.

I was still in denial at the time and simply wanted what was best for my child, so I was not realizing that I had an incurable, uncommon autoimmune illness. Thank God, my pregnancy and delivery went smoothly. The doctors informed me that I could not breastfeed my child since I needed to take my medications. However, I requested at least two months for breastfeeding before I began taking medication.

Being diagnosed with scleroderma has been like riding a roller coaster; the first year after starting the medicine, I had trouble breathing. My hands started to tense with light tension, which hurts. There are instances when I sleep for seven days before feeling fine.

How have your symptoms progressed?

I stopped working in August of 2019 and was quite depressed because cooking is my way of therapy. My doctor informed me that I required a lung transplant and would need to carry at least two liters of oxygen each day because my lung function was less than 50%. I informed them that I was unable to do so since working in the kitchen would be impossible. I requested a month to work on myself and she agreed.

I looked into the idea that working out or exercising will improve lung function, but I’ve never worked out before; I just practice yoga. Well, when the doctor tested my 02 stat after a month of consistently working out hard, it was 99%. They were all amazed and advised me to keep going because it was benefiting my lungs.

It used to be difficult for me to walk even one block, but now I am capable of three. The physician opted to postpone the transplant for the time being. Because of my job, I can’t work out every day, but I try to do it twice or three times every week.

What are your hobbies?

I have created a culinary blog called @iamjojobites on Instagram as well as a YouTube channel, since I enjoy cooking. Even back when I was taking my college entrance exam, my parents wanted me to be a doctor but I wanted to be a chef.

In the long run, I didn’t finish my bachelor’s on time because I got married early. I met my first ex husband and fell in love in my third year of college. I decided to follow my heart. I finished my studies after my firstborn. I went back to school to finish my bachelor’s, but I didn’t push it to be a doctor because I was already a mom. I decided to become an entrepreneur and become a chef.

Outside of cooking, I enjoy sharing photos and stories on Instagram because I understand that my face won’t look the same in five or ten years, and I’m okay with that. I also adore taking photos. Here in New York, I took a photography course. I primarily create portraits or landscapes.

How has scleroderma impacted your job?

Since 2017, I have been employed by a corporation as a chef. They initially had no issues, since I always left the workstation when I had a flare-up and passed out. However, I passed out at work in June of 2019, and the employer made a huge deal out of it. They advised me to take a rest period, FMLA, or force medical leave to protect their reputation.

According to my physicians, I had to heal for two weeks before I could return to work. However, they persisted, claiming that because I am a good worker and our company is unionized, they could not immediately terminate me. However, their HR missed a crucial item in my files that prevented them from moving further. To file a case, I looked for legal assistance.

My buddy extended an invitation to visit California in 2021. My resume was posted, and I was hired. I must work to provide for the kids. My brothers are with us; I know that. However, if you’re on your own, it’s different. So I spent a year in California. The weather makes it experimental, but happily, I’m not relapsing. But, I started to miss home and started to lose weight.

This firm that I’m working for at the moment texted me out of the blue in August when I was visiting my family to let me know that they were seeking a sous chef. Since I believed this position to be a fraud, I didn’t even apply. But after a day, they contacted me to see if I was available for an interview. I explained that I was only in town for a vacation, and they said that was okay and that I could still come in for a meeting. I got a terrific connection with the executive chef there when I went for an interview. I thought I saw an angel. I received a ticket to return home thanks to that employment.

How has it affected your relationships?

My marriage fell apart. Why? I have scleroderma and my ex-husband could not accept it. Especially when the doctor emphasized that having another child might be harmful to me, he assured me that everything would be great because I had already survived one.

In 2017, I divorced my ex-husband and began looking for a therapist. I was thinking about and recognizing that I had scleroderma at the moment, and it’s been two years since I discovered I had scleroderma. I thought, “Oh my God, Jojo, your body is already failing you.” However, I must prioritize feeding my children. My son was just two years old at the time, and his father is no longer in my life. I have to be tough. So I can raise him the same way I raised my other two children.

I have an excellent support system. My parents were there. My brother was here. The therapist assisted me in understanding what was going on inside of me and how life needed to change. My parents were the ones who helped me the most. My mother was the only one who could calm me. My kids are very tolerant and respectful.

Jojo with her children, Ghaby, Alex and Kiyan

What treatments and medications have you tried?

I participated in an Aurora research study for interstitial lung disease in 2020. My dermatologist recommended me to a physicians in New York. I got a medicine for Raynaud’s symptoms. Even when exposed to chilly temperatures, I could walk three blocks without wearing gloves, and my fingertips are still rosy. However, it didn’t last long. Now, when the temperature reaches 60, my fingers are already turning purple right away.

I visit my physicians at NYU and HSS, which are both learning hospitals. When I come in with Raynaud’s, the pupils are ecstatic and snap photographs of my hand. I’m delighted that these kids will have a firsthand glimpse into scleroderma sufferers’ lives, not only in the book.

I take eight drugs, including lidocaine ointment. I adore my medication – all of them, since they will aid in my survival. Lidocaine removes my discomfort, numbs my hand, and immediately cures my ache. Gabapentin is the medication that helps me relax at night.

What is your best way to deal with your scleroderma?

I meditate and pray frequently. In 2020, a buddy brought me to a Bible study, and I believe I discovered Jesus or my thing with this group since our pastor is open-minded and doesn’t judge.

What lifestyle changes have you made?

I stopped consuming collagen-rich foods. I no longer eat red meat, especially rough red meat. I gave up eating burgers. I will eat vegetables if there are a lot of them, as long as they don’t have a lot of collagen, but I usually eat chicken or fish. If I want to consume alcohol, I limit myself to 1-2 glasses of wine.

Jojo and her best friends, Loui and Arvee

Have you met anyone else with scleroderma?

Someone from the Philippines texted me, since I often discuss systemic sclerosis. She is an advocate and has a podcast on scleroderma. Our first chat was about her receiving treatment. I informed her I didn’t go through it since I assumed there were differences in processes between nations. I advised her to seek rheumatology care since I didn’t want her to be misdiagnosed. She is a really strong woman.

Jojo and her family (Ghaby, Alex, Kiyan, Tatay Mario, and her brother Mon)

What are your goals and dreams?

I’ve always wanted to be a chef. When I was around 24 years old, I had a catering firm and later a mini-restaurant in the Philippines. But when I moved to America with my first ex-husband, I had to put my career on hold and work as a babysitter for 8 years. After my ex-husband left, I was a single mom and struggling. There’s a saying that once you survive New York, you will survive anywhere. It’s true. New York is really a jungle, but it’s the way how you embrace your life that matters.

In 2017, I achieved my objective, but I’m not going to stop there; maybe in a year or two, I’ll be an executive chef, so why not?

Our disease is extremely uncommon and incurable. That is why if a study is being provided to me right now, I’ll accept it even if it may not be advantageous to me. That way, future generations will be assisted and will not feel the same way I do. If someone asks me what I did in my life on Earth after I’m gone, I’ll tell them I became an inspiration to individuals with scleroderma.

What do you wish you knew earlier?

I smoked from the age of 18 until I was 30 years old. I wish I hadn’t smoked throughout my early years.

I’ve also learned patience. Patience is a skill that you must master. Sometimes I want to cut my finger off because it’s so inflamed and itching, but I just bathe my hands in hot water with Epsom salt and wait for the discomfort within my finger to go away.

What is your advice for those with scleroderma?

I’m not sure what counsel I can provide because I’m still learning, accepting, and living with it. I constantly remember that I desire to live. It breaks my heart to see individuals take their own lives so easily.

Have hope. Please be patient. Accept what you have and live your life your way. Follow your aspirations. Don’t give up on your dreams. That is what I tell my children.

When you dream, make sure it’s achievable. And when you have achieved that dream, enjoy it to the fullest.

July 24 2023

Michelle Gray

sclerounited_ppavrw Issue 3 Art, Kentucky, Parent, Perserverence

Louisville, Kentucky (United States)

MICHELLE GRAY

Scleroderma Stories Issue 3

Please introduce yourself

I’m Michelle. I am 37 and a single mom of two kids. My son is fifteen, and my daughter is eight. I currently live in Louisville, Kentucky. I like reading books and musicals, the movies, and just anything art related. My favorite movie is “The Princess Bride.

Has scleroderma impacted your hobbies and interests?

Yes. My hands are pretty much the worst right now. They’re contracted, so it’s hard to hold a book in my hands, or my phone, or just really anything in general. What has helped is that I have a phone stand that I can put my phone on as well as a thing called a Pillow Pad. You can set a book or notebook on there so you don’t have to hold it in your hands. And then, you can just read that way.

When were you diagnosed?

I was diagnosed unofficially on November 11th, 2016 by an Emergency Room physician, and then I got an official diagnosis in January of 2017 when I saw a rheumatologist for the first time.

Leading up to the diagnosis, my hands would swell overnight but typically go down during the day, for the most part. My index finger on my right hand became contracted, and I couldn’t really use it. That happened over the summer of 2016. Around October of 2016, I started to get face tightening, and my mouth became smaller, so it became harder to eat.

How did you feel when you were diagnosed?

I’m not really sure. I had googled my symptoms, like everyone does, and Google was actually right, so I guess I was scared. More so scared that Google was right and that something serious was wrong, but also kind of relieved because I knew right off the bat. I didn’t have to go through as many doctors to get an official diagnosis. They knew what it was, so I could go ahead and start treatment.

My last job had actually involved patients that had scleroderma. However, I wasn’t personally working with the patients. I worked at a specialty pharmacy, and the drug program that I was on was used for patients with scleroderma.

After I was officially diagnosed in January of 2017, I googled scleroderma so I could find more information. I found the scleroderma organization.

What symptoms have you developed since your diagnosis?

My throat is inflamed, I have been told that I have a little bit of the lung scarring and interstitial lung disease. I have inflammation in, I believe, my small intestine. My stomach doesn’t move food as quickly, so there’s issues there with that. I also found out that I have arthritis in my toes.

The hardest symptom is probably the things that are going on with my gut. I’m not able to eat certain foods, or foods make me nauseous, so it can be hard to sleep. I also don’t really have an appetite sometimes because I know what could happen later if I eat.

Michelle with her children, Jeremiah and Nova

What is the scariest part of living with scleroderma?

I think for me, right now, probably the scariest part is having to resign from my job. I had to resign because it was too painful to work an 8-hour day with my hands being the way they are. That has made things difficult because you want to be able to provide for your family. But it was just too painful. You get too exhausted at the end of the day, and you can’t do things that you want to do.

Did bosses or friends understand what you were going through?

My boss was pretty understanding. I did have to go to the doctor quite a bit. I would have to take off days to go to appointments, but they were very much understanding and always offered help if I needed any of it.

After I got diagnosed, I found out that a friend that I had gone to high school with also has scleroderma. It was really interesting to know that because I found out that there was someone that I know personally who knows what it is like. She has more internal involvement than I do, but even though our symptoms are a bit different, still just knowing that somebody knows what it is like has been extremely helpful.

I also joined a Facebook group, and there was someone I had met at work. I’ve been communicating with her occasionally to check in and have a mentor of sorts.

What lifestyle or mindset changes have you made?

I have definitely had to realize that it’s okay to ask for help and that sometimes, things are different, and I’m not going to be able to do everything like I used to be able to do them. And, it doesn’t make me weaker when I ask for help. I have to know what my limitations are. Sometimes, I can only do so much in a day, and that’s it. I’ve realized that’s okay as long as I get up and keep doing the best that I can.

Have scleroderma’s effects on your physical appearance influenced your confidence or view of yourself?

Yes. Now, a lot of times when I look at the mirror, it’s hard to not look at myself and see someone who is sick and has something wrong with them, even though maybe other people can’t see it.

Sometimes it is really hard to look at pictures of myself before I was diagnosed and see the difference in my face, because I don’t look like how I once did. I don’t think people understand how hard that can be. You used to look one way but now you don’t, and you basically can’t do anything to change it. It can be hard some days… It can be really hard.

What helps you get through difficult times?

My faith, my family, and just knowing that there are people out there who care about me. Knowing that they’re willing to help me if they know what’s going on and that they understand why certain things can and can’t be done helps me. There are people just willing to listen, lend a hand, or just be there for me.

How have your kids helped you or learned about scleroderma?

My son, Jeremiah, will help me put on shoes, put on a jacket, or help me carry things. My daughter, Nova, is a bit sassier, so she kind of has a bit of an attitude when I ask her to help me, but she’s always willing to try and help me. She’ll try to help me make my coffee in the morning; she really likes doing that for me.

Any time that I need something, such as if I cannot reach something in the kitchen or if I need help opening drawers, they are always willing to help me do things that I just can’t do.

I did explain to my kids what scleroderma is. As things have progressed and new symptoms have shown up, I’ve explained as we go so that it isn’t too scary. I think their main thing was really, “What’s going to happen?” Like, am I going to be okay? I think knowing that has helped.

Michelle’s children, Jeremiah and Nova

Have you had to make any adjustments because of COVID?

I ended up working from home before I had to resign. I make sure to wear my mask when I go out and limit how much interaction I have with going outside and in public places. I only go out if I have to, and I get in and get out of the store quickly. We are considered high-risk, depending on the medicines you are taking. I need to make sure that I don’t get sick because it wouldn’t be good along with scleroderma.

What treatments or medicines have you tried?

I’m taking Cell-Cept and pantoprazole. Those are the two I take on a daily basis. My least favorite is the Cell-Cept because I have trouble swallowing. I have to chew it up, and it’s pretty nasty. The pantoprazole is helpful for my stomach and helps the nausea be not so bad. I have also gone occupational therapy a few times to stretch out my hands, but that’s about it.

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

I would say that to do your best, take each day as it comes. Take it one day at a time, and don’t be afraid to ask for help if you need it. Be upfront and honest if you’re tired or fatigued, and know that there are other people out there that are dealing with scleroderma or other chronic illnesses.

You’re not alone, and we can all help each other by listening to each other. There are people out there willing to listen and be there with you to get through it with you, if you need it.

Is there anything else you would like to share?

I was diagnosed later in life. I was originally diagnosed when I was 33, so I would just try to remind myself that every day is really a gift. I just remembered that, as long as I am still alive and breathing, I can potentially help someone else by just keeping on going.

July 24 2023

Angela Fernandez

sclerounited_ppavrw Issue 2 Art, California, Child, Juvenile Scleroderma, United States

Los Angeles, California (United States)

ANGELA FERNANDEZ

Scleroderma Stories Issue 2

Please introduce yourself

My name is Angela Fernandez. I am 11 years old, and I am from Los Angeles, California. I like to paint or color because it helps me get rid of stress. My dream is to have a big house, make an art gallery, and have a big kitchen in my house to bake. My goal is to have a good job that can help me pay for my treatments and my medicines.

Angela Fernandez Painting Collection 480x720

When were you diagnosed with systemic scleroderma? What led to this diagnosis?

I was diagnosed with systemic scleroderma in September of 2016, although I believe I have had scleroderma since I was 5 years old. I believe this because of physical changes I have noticed and seen throughout my photographs.

Everything began in the spring, when I noticed a small but deep hole on my elbow that was at some point just a scratch or small lesion. The lesion was not healing whatsoever, but I did not feel any symptom of infection. But, obviously, it became worrisome. Furthermore, I began losing my appetite, and I did not even want to drink water anymore. As a result, I began feeling constant and chronic fatigue. I would sleep a lot and would wake up late into the day. Whenever I went in the car, I would instantly fall asleep.

My doctor gave me a month to gain weight, but I never did, and I still had no appetite. My mother then took me to the pediatrician to get my elbow checked out, and it was there that the doctor noticed how skinny and underweight I was. My pediatrician asked me if I was worried about being more full, and I answered that I didn’t want to be fat, and thus my doctor thought that I had infant anorexia.

After the month, I visited my pediatrician once again, and it was then when she noticed something off with my nails and arms. She also noticed that my hands couldn’t touch my elbows. As a result, she decided to do blood work, and we received two possible diagnoses. One was Lupus and the other arthritis, so she referred me to a rheumatologist at the Los Angeles Children Hospital.

After many tests, questions, and evaluations I was diagnosed with systemic scleroderma. I was put into further tests, and I was then also diagnosed with esophageal dysmotility and Interstitial Lung Disease.

Angela with her family

How has this affected you?

This has affected me in many ways, including movement in my fingers, difficulty with opening my mouth, fatigue, difficulty concentrating, and insomnia. I have been receiving infusions since 2016, which have been really difficult, especially due to the hardness of my skin. Doctors have a really hard time placing needles correctly, and over the years my veins have become thinner and thinner, and the pain is greater every time.

I have also left school due to bullying. Emotionally, it has been very difficult to accept my diagnosis because it meant I can’t play like I used to and like the rest of the kids my age. It has been three and a half years, and I’m still learning how to live with this phase of my life.

Although it hasn’t been very easy, every day I try my best and do what I can. I have met many wonderful and amazing people who support me to surpass this disease.

I am currently receiving physical therapy to regain the mobility of my hands and arms. I have 2 calcinosis in both elbows, one with another ulcer in my fingers that make my days painful. I struggle daily with my fatigue and my low school concentration. I cannot open my own bottle of water. Everyone thinks that I look good, but in reality it is very different.

An ulcer on Angela’s elbow

What is the scariest or worst part of having scleroderma?

Having to go to the hospital and the studies on me, especially blood tests and esophagus studies, I think that’s the scariest. For a while, I was not gaining any weight, and my gastroenterologist suggested a feeding tube and explained how it would be, and it was difficult for me. I started taking smoothies with protein and gained a few pounds.

Have you met other people your age with scleroderma?

I have met girls from Mexico through the internet. I also attended the childhood scleroderma convention.

What advice would you give other children with scleroderma?

That we are not alone. That we have many people around us who love us, and that scleroderma attacks us all differently.

Science is advancing every day to help us find a cure.

That we are something unique in this life, and it makes us be better people and value what we have, even suffering many things.

God is always with us, and his timing is perfect. Even if we don’t see him, he is always with us.

July 24 2023

Amy Gietzen

sclerounited_ppavrw Issue 2 Advocate, Art, Coaching, Dance, New York, United States

Buffalo, New York (United States)

AMY GIETZEN

Scleroderma Stories Issue 2

Please introduce yourself

I’m a middle child with an older sister and a younger brother. I live in upstate New York with my parents. My family is everything to me.

My hobbies are painting and quilting. Of course, my #1 passion is being an advocate and speaking out about scleroderma and raising awareness in any way possible.

I have a best friend that I have known since grade school who is an amazing person in my life. I babysit her beautiful kiddos twice a week, and I love those babies to bits!

Amy babysitting Willow and Maverick, who keep her laughing and smiling even on the worst days

When were you diagnosed with scleroderma, and what led to your diagnosis?

As a teen, I was working at a nursing home when I started to feel wrist and elbow pain. My fingers had always been big and puffy, but they were sore, and I noticed they turned blue when I was cold or stressed!

That went on for about a year before I finally, with my parents’ guidance, made an appointment with an orthopedic surgeon to get checked. He was the one who looked at me and said, “you have scleroderma!” Get your affairs in order and work as long as you can! It’s terminal!

That was the day my life completely changed on February 15, 2001.

Amy with Kelly, her “ride or die” and best friend since fourth grade

How did you react to this?

My first reaction was kind of blank. I had no idea how even to pronounce this disease, let alone know what it was.

Through a ton of research and after five years of seeing doctors who had no idea what to do with me, I ended up at a hospital five hours from my home in Pittsburgh. They had a specialist who had 40 plus years of experience, and I desperately wanted answers and some form of treatment. He and his team of researchers and medical professionals gave me just that.

I had found my first glimmer of hope in this movie reel of despair. I finally got answers, and even though some of the answers weren’t necessarily definitive, it was a start. I was still overwhelmed and angry that this disease took over my whole life, including my goals and future dreams. I went from shock to outright furious in the first five years.

I want to say my anger faded quickly, but it didn’t. It took me a long time to come to grips with my new reality and how I felt, looked, and how my body worked. I had to learn myself from the inside out all over again, and it was not easy.

One of Amy’s many treatments for scleroderma: a pic line was placed in her neck for three days

As a 19-year-old, what did scleroderma change about your lifestyle?

It changed EVERYTHING! My body wouldn’t let me do many things I was used to doing and things I enjoyed. I loved dancing, but I was stiff all the time after diagnosis, and it became difficult for me to move without being in pain. I coached softball and eventually had to quit because I couldn’t participate in practices.

Even small things like tying my shoelaces and buttoning my shirts became quite tricky. My hands and fingers started to contract and curl inwards. It got so bad that I had to undergo several surgeries to straighten my fingers out so I could better use them.

Before I got sick, I wore little to no face makeup. I had very clear, blemish-free skin. It seemed almost overnight that my skin, not just on my face but all over my body, started to have red blotches all over it. I was covered from head to toe! I learned later that the red blotches were called telangiectasias, and they were broken capillaries, a consequence of scleroderma. Still, it was a prominent embarrassing feature that I now had to live with. People would see me as a complete stranger and would ask if I had an allergy or if I had been in a fire.

It made me feel singled out and like I was so unattractive. It did a significant number on my self-esteem for sure.

Amy at the airport. When there are long walks, Amy gets around by wheelchair.

Is there anything that has helped you overcome this effect on your confidence?

It has taken me some time to be okay with all of the physical changes scleroderma has placed on me.

I think the biggest thing is being okay with who you are, and the one thing that has helped me the most in achieving that is my family. They accept and love me unconditionally and know that, despite any physical symptoms I may have, I’m still me, and I’m breathing each day, and they and I are grateful for that.

Trusting that I am enough makes me feel that my imperfections are beautiful.

Amy with her dad and caregiver, John, at a speaking engagement in Houston with NORD

Do you have any advice for those living with scleroderma or other chronic illnesses?

Be your own advocate! You need to know exactly what is happening to your body and the best course of action. So, do as much educational work up as you can. You live with it daily, so you are yourself the best person to judge how you are feeling. It is definitely good to know the ins and outs of your disease.

Lastly, do not take no for an answer. Keep fighting to get the answers you want and you must feel comfortable with your team and treatment plan! If you are not sure about something, ASK.

It is your right as a patient to be given the answers or, as close as they can get to the answer. Fight for your life. It is the only one you have!

Amy (right) attending the Steffans Foundation’s Interprofessional Education Event, where she was a keynote speaker