Systemic Scleroderma

July 24 2023

Sarah Bryant

sclerounited_ppavrw Issue 4 British Columbia, Canada, Food, Parent, Systemic Scleroderma

British Columbia (Canada)

SARAH BRYANT

Scleroderma Stories Issue 4

Sarah with her nine-year-old son

Please introduce yourself

My name is Sarah Bryant. I am 35 years old and from Canada. I’m a single mother to a 9 year old boy.

When did you start seeing symptoms?

I was married at the time, and my wedding ring wasn’t fitting anymore. I kept having them change the size, and I didn’t realize what was going on. My fingers started to swell. I couldn’t make a fist like I used to, and my skin was dark and tight.

I had my son in 2013, and I noticed something was off while I was pregnant. By 2014-15, my fingers were turning blue. Sometimes one finger turned white when I went for a walk. I didn’t know what it was. I went to my doctor, and she thought it was Raynaud’s. She told me not to worry about it. Five weeks later, my entire hand and feet were turning white; they were also numb. Then she referred me to a rheumatologist.

I went to the rheumatologist, and he noticed dry skin on my forearms. He did some blood work, after which he told me I had systemic sclerosis in 2016.

How did you react to the diagnosis?

The rheumatologist didn’t tell me much about it at the time, and I still remember going into my car and Googling about it, which was the worst idea since it only showed the worst case scenarios, and that scared me. I thought my life was over right then. I fell into a deep depression. For about a year after that, I was just reading about every little symptom I had. It took over my life.

What helped me were the antidepressants and anti-anxiety medications. I’ve come to terms with it now, and it’s not as bad.

Have symptoms progressed?

It started off with the dry skin on my arm and did not progress until 2017. It was hard to breathe after climbing the stairs. And then I was diagnosed with interstitial lung disease.

The first medication we tried was methotrexate and I had to self inject it. I only did it for maybe a month, but the symptoms were too much for me—it made me too sick. Then, we tried mycophenolate at a small dose, which wasn’t really helping either. My lungs were still deteriorating.

How has this impacted your daily life?

Before having my son, I worked at a bakery and a grocery store for 10 years, which I enjoyed. However, now I cannot walk into a grocery store without feeling numb. Returning to my previous jobs was not an option, so I have not worked much. I did start working part-time at a Starbucks in another town, but my lung condition worsened, and I found it difficult to keep up with the fast-paced work.

Last year, in August and September, I started working again at a Starbucks in my hometown. It has been going well because I informed them of my health problems and schedule as a single mother. However, I do get out of breath with certain tasks, which can be challenging because some of my colleagues are unaware of my condition.

What do you enjoy doing?

My life revolves around my son, and we do everything together. While I am still able, I try to do as much as possible with him and cherish the time we have. We go for walks, travel around British Columbia, try new restaurants, and attend fundraising events for rare diseases.

My son enjoys skateboarding, and we also attend conferences where we can meet other patients and specialists who provide valuable advice and support.

Sarah skateboarding with her son

Have you found any treatments helpful?

By 2020, we tried a higher dose of mycophenolate, but it didn’t help. The doctors told me that I could either try to get on the transplant list for a lung transplant or I could go for a STEM cell transplant or do rituximab infusions every six months alongside the mycophenolate.

Since I did not have much emotional support, family, or anybody to take care of me after a transplant, I went for the infusion. I started that about a year ago. The first infusion actually wasn’t rituximab but something really similar. Anyway, I had a bad reaction, so now I am just on rituximab.

It has been going really well so far—it hasn’t made my lungs better, necessarily, but it’s evened them out. Mycophenolate, which is the same thing as Cellcept, has really helped, honestly.

In the beginning, I was not taking my medications like I should have, and because of that, my lungs kept getting worse, and my doctor was really upset with me. Now I am taking my medications and having my rituximab infusions, and it’s helped me the most. My lung function is pretty stable at the moment.

How have your experiences meeting other patients been?

I have thoroughly enjoyed meeting other people who understand what I’m going through. I’ve attended a few conferences in Vancouver where specialists give talks and patients can connect with one another. It has been an incredibly positive experience, as I have received a wealth of advice and it’s just comforting to connect with others who are going through similar struggles. Additionally, last year, I participated in a fundraising walk in Kamloops where I met even more people with my condition.

Interestingly, I recently encountered a woman with the same condition as me in a nearby mall. I had seen her twice in the past week and knew she had scleroderma, which is rare to come across. After mustering up the courage, I approached her and asked if she had heard of scleroderma. She confirmed that she had it and showed me her hands, which nearly brought her to tears because she had never met anyone with the same condition.

We had a meaningful conversation about it, and she expressed that she typically does not attend conferences or events like the ones I had gone to.

Are you a part of online groups?

I am in contact with members of the community through Facebook support groups all the time.

Newly diagnosed patients often reach out to me, and I provide them with advice and support. I also occasionally meet up with a couple of ladies for coffee to stay connected.

As a mother, do you face additional challenges?

When I was diagnosis, my son was young. Now, he’s aware of my condition, even though he’s only 9.

I have limitations on certain activities with him, especially during cold weather. I experience stiffness, tiredness, and anemia, which my son may not understand, causing him to call me lazy at times. It has been a challenge since my diagnosis, and I have had to rely on family members for help taking care of him.

Have you been open with family and friends about it?

I am open about my disease with my family and friends. At work, I haven’t shared much because it’s not relevant, but all my friends know about it. It was a little awkward in the beginning because they didn’t know what to say and were scared for me, but they were supportive.

I’m really close to a lot of my friends, but we don’t see each other that often. I have a close friend named Katie who has been there for me throughout all of it. My mom is also supportive, but she’s sick.

What lifestyle modifications have you made after being diagnosed?

Before being diagnosed, I had plans for the future, but after being diagnosed, I’ve learned to live day by day. It’s tough, and I’ve seen stories of people who have passed away from being scared of my condition. I try to do as much as I can, but I look at things differently.

Self-advocacy has been a huge thing for me because I had to take control of my treatment and call my doctors to get the right infusion. I’d like to be in remission and be able to deal with the symptoms I have.

What is something you wish you knew when you were diagnosed?

I wish I knew that scleroderma is not a death sentence. Different forms of scleroderma have different effects, and every person has a different experience. Don’t worry too much, and reach out to support groups instead of relying on Google.

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

Try to live your life and find support from friends, family, or support groups. Self-advocacy is essential, and don’t rely solely on Google for information.

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

Tiare Tolzmann

sclerounited_ppavrw Issue 3 Family, Hawaii, Systemic Scleroderma, United States, Video Games, Writing

Kailua-Kona, Hawaii (United States)

TIARÉ TOLZMANN

Scleroderma Stories Issue 3

Please introduce yourself

My name is Tiaré Kelikoa‘elakauaikekai Tolzmann. I am 30 years old and live in Kailua Kona with my husband, Alvin. My parents, two brothers, maternal grandmother, and 3-year-old niece and nephew all live within a few miles. I am very close with my family, and they are a major source of support to me with my scleroderma.

How has your culture and heritage influenced your experience living with scleroderma?

I am mixed racial, raised in a multicultural household with Native Hawaiian, Asian, and American cultural practices.

Native Hawaiian beliefs regarding health view health care as a balance of caring for physical, mental and spiritual health. I believe that this outlook has helped me greatly in balancing my scleroderma healthcare with the rest of my life, especially in the early parts of my disease.

The Asian beliefs from my mother and grandmother place emphasis on the role of diet in health, and I modified my diet substantially since having scleroderma.

What are your hobbies?

My main hobbies are reading, video gaming, and writing. Scleroderma involvement in my hands impacts my ability to use video game controllers and typing, so I have to limit my time spent partaking in these activities. Being able to indulge in hobbies helps me to relax and take my mind off my scleroderma symptoms.

When were you diagnosed with scleroderma?

I was diagnosed with diffuse scleroderma in November 2015 at the age of 25. At the beginning, I mostly had typical scleroderma GI symptoms – acid reflux, food intolerance, rapid weight loss. Two months later I developed telangiectasias and Raynaud’s.

Five months passed between my initial symptoms and my diagnosis. I had not heard of scleroderma before I was diagnosed, but I was familiar with autoimmune diseases like lupus and MS. My mother was a hotel concierge who knew Sharon Monsky, the founder of the Scleroderma Research Foundation. When diagnosed, I was upset that it was not a curable condition, but I was relieved to finally have an answer to why I was so sick. I was also happy to hear that it wasn’t something that was my fault.

I had a hard time reconciling my declining health with how active I was (I was in college and had three part-times at the time). I was frustrated that I had to cut down the pace of my life so drastically and learn what my new limits were.

Still, I hit the ground running. I love to learn, and I feel empowered by having knowledge about possible symptoms and treatments. I also feel good about being informed enough to pass along information to other patients and advocate for scleroderma awareness.

Tiaré and her husband, Alvin

Could you please describe the symptoms you’ve developed since your diagnosis?

Three months after I was diagnosed with scleroderma, I had a scleroderma renal crisis with internal bleeding (March 2016). I was in the hospital for several weeks, requiring blood transfusions, a dozen medications, and round-the-clock care and monitoring.

If I had not been diagnosed with scleroderma before the renal crisis, I wouldn’t still be here. The medications used to treat scleroderma renal crisis are very different from those used for typical kidney disease. Developing scleroderma renal involvement really changed my symptoms.

I have to be very careful with my diet, from the types of food to the amount of fluids I have on a daily basis. I get tired easily and have to monitor my blood pressure daily. I take medication 7 times a day, and I have to remember every dose. I developed neuropathy, one of the worst symptoms I have to deal with because it is so painful and comes out of nowhere.

The hardest part of living with scleroderma is the tumultuous nature of the disease. You can be stable for a long time and suddenly develop a problem out of nowhere. Every patient is so different, and it’s hard to know how long a symptom will last or if it will get worse. Really, any symptom can be the “hardest” to deal with at any given time because the severity varies so much. For me, the strain on mental health is the hardest thing to deal with. It is not a direct symptom of scleroderma, but it is a result of living with it.

Tiaré and two friends with scleroderma

How has scleroderma affected your job and relationships?

I became unable to work after my renal crisis. I do not have the stamina to work full time. I am also on three immunosuppressant medications, which prevents me from working with people because my risk of getting sick is too great. I can still type, and I do freelance writing, but I have to be careful not to strain my fingers by typing too much.

What mindset or lifestyle changes have you made as a result of scleroderma?

My energy level dropped significantly post scleroderma. I used to be one of those “I’ll sleep when I’m dead” people. Now, I frequently take afternoon naps. It is rare that I am completely excluded from activities, but I do have to make modifications and pace myself.

Scleroderma has forced me to appreciate the good days. I have learned to focus on the positive while recognizing the impact of the negative.

Have changes to your physical appearance influenced your view of yourself?

Ironically, when I was first getting sick people kept telling me how great I looked, and it would upset me to no end. On the outside, it simply looked like I’d lost weight, got a tan, and had cosmetic treatment on my face. It wasn’t obvious that my GI was shutting down and I couldn’t eat, or that the hyperpigmentation was from kidney disease.

Scleroderma did change my face shape, and I do feel weird about looking at old photos and feeling like I can’t reconcile that person with myself.

What helps you get through difficult times?

My family, my husband and my friends are all amazing sources of support. The best thing that they do for me is make me feel normal. When there is a question of needing accommodation or help, they are great about asking me instead of assuming.

As someone with scleroderma, have you had to make any special adjustments for the pandemic?

We have had to distance from others. We do not let anyone come inside our house, and we have only been physically close to immediate family.

We are lucky to live on Hawaii Island, where we are able to get outdoors and maintain social distancing. When we do go to the store, we wash or wipe down packages with cleaning products.

What are some of the medications you have taken?

I take omeprazole for acid reflux, amlodipine for Raynaud’s, and losartan and carvedilol for blood pressure. For immunosuppression, I take methotrexate, mycophenolate, and hydroxychloroquine.

I also take opioid pain medicine as needed for severe pain. I took Lyrica and gabapentin in the past for neuropathy, but I had a lot of side effects and they gave me serious brain fog.

Do you have a lot of scleroderma-related expenses?

Many of my out of pocket scleroderma expenses have to do with lifestyle support, such as special foods, therapeutic devices, and medical travel. I have to follow a renal friendly diet, which involves buying low sodium ingredients. Renal safe supplements are expensive and not covered by insurance. I also treat my pain with a TENS unit purchased out of pocket. My gastroenterologist is on another island, so I have to buy a plane ticket every time I see him as well as ground transportation.

Since I don’t work, I receive SSDI money every month. I have to carefully budget for health expenses, and we try to keep a good amount in reserve in case of an unexpected health cost. Having to worry about health care costs makes me much more thrifty.

Are you in any online scleroderma communities?

I am a member of several scleroderma Facebook groups. I like to read posts in the groups and know I’m not alone in what I’m going through.

I more often find myself commenting and providing feedback on others posts more than posting myself. I feel good about helping others, and it makes me feel like I’m making a difference.

Have you met anyone else with scleroderma?

Interestingly, the spouse of my old boss has scleroderma, so I knew someone right away. Her symptoms are very different from mine, but it helped to know someone had it for so long and was still around! After my renal crisis, myself and my parents traveled to the National Scleroderma Patient Education Conference. There, we met many other scleroderma patients.

Meeting other young adults with scleroderma made a huge impact on my view of living life with scleroderma. It really renewed my enthusiasm for life. It was not only an expression of kinship with other patients, but making real friends that are special people apart from having scleroderma.

What are some of your goals or dreams for the future?

I want to create a patient-to-patient conference to serve scleroderma patients and enable them to live their best lives with scleroderma. I’d like to host it in Hawaii as a trans-pacific effort with other Pacific Ocean bordering nations with large scleroderma organizations, such as the Philippines and Australia.

I am very passionate about Hawaiian culture, and I am currently able to share it with others by writing for Big Island Pulse, a community news and interest site.

July 24 2023

Michele Barilla

sclerounited_ppavrw Issue 1 California, Parent, Systemic Scleroderma, United States, Utah

Southern California (United States)

MICHELE BARILLA

Scleroderma Stories Issue 1

Michele and her husband

When were you diagnosed with scleroderma?

I knew I was “predisposed” to the CREST form of scleroderma for close to 15 years before my official diagnosis in October of 2017. Of course, the CREST form is now actually called limited cutaneous systemic sclerosis.

I seem to be progressing very slowly. I was optimistic that maybe I had been misdiagnosed but was told my optimism was denial in disguise.

What led to your diagnosis?

Originally from California, I moved to Utah in the late ’90s. Randomly, during some cold winter months, my hands started turning white and feeling numb. Freezer sections of the grocery store were awful, and I couldn’t feel my hands well enough to even hold onto items. My primary care doctor diagnosed me with Raynaud’s – oftentimes an earlyonset symptom.

At the time, my husband and I had also been trying to start a family. Looking into in vitro fertilization, I found a doctor in Los Angeles who gave me a list of tests he wanted to run while still in Utah. With the results, he said I was a candidate as it appeared my pregnancy problems were due to that fact that I had an autoimmune condition. This occurred around 2001.

He also sent me to a rheumatologist who observed the markers for what was then still called CREST; although, at the time, I really only had the one symptom (Raynaud’s). As a reminder, CREST stands for Calcinosis, Raynaud’s, Esophageal dysmotility, Sclerodactyly, Telangiectasia.

The rheumatologist also recommended that I leave a cold climate, so I told my husband, “Doctor’s orders – gotta move home to California and start IVF with the doctor in Los Angeles!”

How was the IVF process?

When I moved back to California, our IVF had a tumultuous start. We had no sign of success until my second semester! All the while, I was being told, “You’re most likely going to miscarry, so we’ll just keep an eye on you.” Even though eight fertilized eggs were implanted, we had ONE show signs of viability at around 15 weeks! Never did I experience morning sickness or any other telltale sign. We had ourselves a fighter.

He was born in June of 2003, and even that wasn’t without drama. I was a couple of weeks overdue and being seen every day to monitor. Again, never feeling a contraction, etc. On a Friday in June, the doctors told me to come back on Monday. I simply did not feel I could wait that long to get my next monitoring. A girlfriend/doctor reminded me to follow my maternal instincts and require that I get admitted that night. My doctors agreed and scheduled inducing for Saturday morning.

I had a room full of friends and family in my hospital room on Friday night when a nurse came in calm but hurriedly had everyone leave. She then told my husband and me that the instruments were showing I was having contractions and that my chord was tightly wrapped around my baby. She said that if I experienced even one more contraction, I’d be giving birth to a stillborn. So, Friday night – Friday the 13th, 2003 – our little fighter was born via C-section!

Fast forward a few years to his ten-year wellness appointment with the same doctor that had seen him since birth. She “heard” something faint, yet unusual, with my son’s heart and sent us to a pediatric cardiologist.

The cardiologist didn’t seem concerned but said “your doctor is requesting pictures, so let’s go do an echocardiogram.” Minutes later, I was told my kid needed open-heart surgery to repair a giant hole that had been there since birth! Again, he had zero symptoms. It was basically a ticking time bomb. His first surgery actually happened at 11 years old. At the one-year follow-up appointment, we were told he needed another one. His second open heart surgery was at 13 years old. Now, he’s 16 and appears to not require any additional open-heart surgeries. But, obviously, he will be monitored for the rest of his life.

How did your scleroderma progress during this time?

During the two surgeries, I developed “frozen shoulder” – on the left side during one open-heart surgery season and then on the right side during the other. I didn’t put it together at the time, but I think my body was finding a way to exhibit and release the stress I was experiencing. Joint issues (especially frozen shoulder) are fairly common for those of us with scleroderma or other fibrotic diseases.

I was officially diagnosed with limited cutaneous systemic scleroderma when my kid was 14, and I completely believe mine was triggered by stress. Of course, you have to have the predisposition for it, which I had known I had. Since then I have developed the “T” and the “E” as well as the “R” and GI issues.

How has this disease affected you?

As I mentioned earlier, mine appears to be very slow-progressing, and I almost feel guilty for being asked my experience and for claiming it in the first place. BUT we don’t all experience this disease the same way, so I am actually happy to share my story.

I believe I spent much of the last two years waiting for awful symptoms to take over and have robbed myself of continued joy and love – especially with our kiddo being 16 and soon off to “adulting!”

As of right now, I am feeling good and trying to manage my stress. Reading, starting a bit of running, and eating a keto/carnivore diet is all helping.

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

1. Deal with whatever symptoms you actually have. I’ve wasted a lot of time worrying about what might start happening to me or reading a lot into innocent aches & pains, etc.

2. Do all you can to empower yourself, whether that’s reading about your condition, finding support groups, or changing your diet (and I don’t think the same diet tweaks work the same for everyone). Keep moving as best you can and allow yourself to rest when needed.

3. Stay consistent with doctor follow-ups.

4. Keep your sense of humor!

July 24 2023

Tonya Moores

sclerounited_ppavrw Issue 1 Parent, Systemic Scleroderma

Newfoundland (Canada)

TONYA MOORES

Scleroderma Stories Issue 1

When were you diagnosed with scleroderma?

I think I have had scleroderma for a while, but the disease never manifested itself until I got older. When I was younger, I was diagnosed with “IBS.” I have hypothyroidism, and I had bad kidneys as a child and was hospitalized… it’s like I have been in and out of doctors’ offices for my whole life, but who knows? That’s the worst thing about this disease – it doesn’t give any answers on what caused it. Hopefully, there will be a cure in the future.

I first got diagnosed with scleroderma back in October of 2018. Before being diagnosed, I had developed these two dark tight spots on my sides. They matched each other. They spread very quickly down the trunk of my body to my thighs, calves, and feet, then up around my chest area and to some underneath my left eye. As of late, I have it traveling down both my arms as well, which has made my arms very weak. I find it hard to lift them above my head now.

What led to your diffuse scleroderma diagnosis?

When I was diagnosed, they first thought it was just limited to my skin. It was ok. While bothersome, it had the possibility of going away in a few years, so I had a good outlook.

Meanwhile at work, my right hand seized up, and I had trouble opening it. Eventually, my hand started turning many colors. I couldn’t perform my duties, so I had to be laid off.

That led me to start UV light treatments and PUVA treatments. They cleared up my thigh area but left behind the muscle damage. I find it hard to walk long distances.

Long story short, after many tests, the doctors concluded that I had diffuse scleroderma. That took me by surprise.

How has this disease affected you physically or mentally?

I was upset and mad; eventually, I accepted the fact that I had this. Life goes on, and I live each day as it’s thrown to me.

But, I’m amazed at how fast this condition progressed. In about a month or so, it spread all over my body. My GI tract is affected. I can’t eat large amounts of food, and I have horrid reflux. I have an echocardiogram coming up next month, and I recently had my pulmonary test done as well. I’m just so tired of seeing doctors.

This condition can really play on your mind. Some days, I find it hard to move. I’m always tired. I can’t do strenuous activities or my muscles will get very tight and sore. This affects what jobs I can do, and it limits my potential. In my last job, I was around a lot of cleaners and chemicals, which might have brought this out more.

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

My advice is to stay positive and not dwell on the disease. You can either try to live with it or let it control you. Some days may be hard, but it’s important to stay strong and have a positive mind.

Hopefully my story helps other people recognize the signs of this disease.

July 24 2023

Juliana Viscardi

sclerounited_ppavrw Issue 1 Brazil, Mother, New York, Systemic Scleroderma, United States

New York City, New York (United States)

JULIANA VISCARDI

Scleroderma Stories Issue 1

Juliana with her children, Victor and Manuela, at a Scleroderma World Day celebration in 2019. Juliana coordinated 10 groups in Brazil (virtually) for the first time after 11 years of the existence of ABRAPES, the only group in Brazil that spreads awareness and advocates on behalf of patients.

How has scleroderma affected your life?

I am Juliana, 46 years old, diffuse scleroderma… and giving my all to see more years with my kids, the best way that I can. I am a mom of two fighters: Victor, who is sixteen, and Manuela, who will turn fifteen this coming March. We have been through so much, like many of us with scleroderma.

Within two years, I lost close to everything that I had built materially. We lost our dream home… We lost a marriage of seventeen years… We lost stability as we knew it.

We are still struggling. Hard. Getting sick and abandoned just made our survival that much more profound.

When were you diagnosed?

I was diagnosed in 2015… I had the “flu” and my symptoms were camouflaged. It was the start of my “journey”, as I like to say it. If not for an elective surgery and, consequently, a visit to the pulmonologist as a routine check-up, I don’t think I would have noticed right away that my lungs were acting up.

My first symptom, shortness of breath, led to my initial diagnosis of hypersensitivity pneumonitis. After failed treatment came the dreaded lung biopsy. Idiopathic Pulmonary Fibrosis was my second diagnosis… and a death certificate!

Over the next year and a half, I developed many new symptoms. These symptoms, red flags to the rheumatic condition, led to my scleroderma diagnosis.

When your diagnosis changed to systemic sclerosis, how did you feel?

As with all of us, I had never heard of scleroderma before my diagnosis, and I did not know anyone afflicted by it.

To be honest, when my diagnosis changed from IPF to scleroderma, my pulmonologist was relieved. She told me I had a better chance and treatment with it. So, I was relieved in comparison but really overwhelmed by all of the new symptoms.

What mindset changes have you made since being diagnosed?

Well, it is a rollercoaster of ups and downs. Resilience and resistance with a lot of acceptance of what the situation requires of you. Not easy. Not constant. You take it as it comes, you adapt. There’s no other way!

Mentally, you have to be well. Since the beginning, I have been on therapy and dealing with depression. It is a must to take care of your new body, your mental state, and your spiritual state.

Scleroderma requires a dive into yourself… an ultimatum on self-care.

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

Advice? Hold on tight to your loved ones! The rest is a crash course on how to become a fighter!

July 24 2023

Rachel Lando

sclerounited_ppavrw Issue 1 Exercise, Systemic Scleroderma, United States, Utah

Utah (United States)

RACHEL LANDO

Scleroderma Stories Issue 1

What type of scleroderma do you have?

I live with diffuse scleroderma. After months of symptoms including sausage fingers, black fingertips with ulcers, fatigue, joint pain, and general inflammation, I was diagnosed in August of 2012.

How did you feel upon being diagnosed with scleroderma?

I had not heard of the disease prior to diagnosis, and I definitely felt fearful. Even though my rheumatologist reassured me otherwise, medical sources on the internet stated that the majority of diffuse scleroderma patients died within five to ten years. My disease initially progressed rapidly, and I started to feel certain that I would be in the five-year life expectancy camp.

By January of 2013, slightly less than five months after diagnosis, my body was failing. There was inflammation everywhere – including my brain – and I started to lose function of my legs and ultimately my mind.

I can’t remember everything that occurred, but at a certain point, the University of Utah Hospital called my father and told him to get on a plane immediately if he wanted to see me alive again. My mother had died 11 months prior, so my family was already steeped in death. It was a hard time.

What kinds of doctors have you seen, and what medical workups and treatments have you had?

Rheumatologist, cardiologist, pulmonologist, gastroenterologist, infectious disease (because of osteomyelitis), opthalmologist (Sjögren’s), dermatologist, and wound care.

For treatments, I have tried UV light therapy, hyperbaric, one study treatment (Humera), PT, and movement therapy. I currently take a few medications as well. I regularly undergo pulmonary function tests (PFTs), echocardiograms, blood and urine testing, and skin biopsies for one study.

What treatments have you found most helpful?

I haven’t found any particularly helpful other than the medication Plaquenil. Minimizing stress helps as well, but that’s not exactly a treatment.

What lifestyle changes have you made?

In terms of lifestyle, I elected (qualified, perhaps) to go on disability after the failure of my large intestine in August of 2017.

Scleroderma has forced me to slow down. Superficially, my fingers are permanently contractured; the “curling” of my fingers has left both my hands in fists. Although there has been some loosening, my skin is tight, and my mouth is very small. Dental issues have become difficult to manage, and eating is a challenge.

I work part-time for a concierge medical doctor. My title is membership director, but I wear many hats. For the most part, I am able to focus on enjoying my time with my four-year-old. I have also become a much healthier eater, and I completed yoga teacher training this past November. My purpose has shifted from achieving the American Dream to living the healthiest life possible and giving back to the disabled community however I can. I have been making efforts to ultimately teach movement to the chronically ill.

What mindset changes have you made?

Ironically, I tend to be more positive than before and less anxious as well. The truth is that most issues don’t bear weight in our lives unless we concentrate on them. I do remain concerned about larger national and global issues like healthcare and education reform and environmental policy.

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

Your disease does not define you; the possibilities for your life remain infinite. Develop a strong support system. Don’t be afraid to ask for help or let people know what’s going on. Trust your instincts. If something doesn’t feel right, try something that does. Don’t fight your disease, live with it. Learn your boundaries and cultivate everything inside of them. Pain is part of life. All we can do is laugh. Make sure to treat those helping us with gratitude and life.

July 24 2023

Silvia Petrozza

sclerounited_ppavrw Issue 1 Canada, Mother, Natural Therapies, Ontario, Systemic Scleroderma

Toronto, Ontario (Canada)

SILVIA PETROZZA

Scleroderma Stories Issue 1

Photo by Valerie Mitsubata

Could you please tell us about your journey?

I’m 36 years old. I was diagnosed with systemic scleroderma 12 years ago, shortly after my first child. At the time, I was 24 years old. It started with severe Raynaud’s syndrome. At first, I thought it was lupus. My doctor refused to test me. However, I insisted. My antinuclear antibody (ANA) test came back positive, and further testing showed systemic scleroderma. I had not heard of scleroderma before my diagnosis. Lupus, yes, but not scleroderma.

I now have 3 children. My Raynaud’s and gastrointestinal issues have been been the biggest struggle. I’m a free spirit, no bullshit kinda girl. It took years for me to change my narrative about this disease. I spent years allowing this disease to own me.

What helped you change your narrative about this disease?

I had become depressed because I felt trapped in my own skin. I wanted so desperately to live life and enjoy my family, but I didn’t know how to do that while living with chronic pain. I felt like a burden to my family because I was constantly in the hospital. I got to a really dark place. Being on pain medication for so long felt like it was holding my soul hostage.

I began seeing a life coach about two years ago. After seeing a life coach for a while and really putting in the work, I started setting goals: writing again (something I love) and getting into healthier habits such as working out, eating clean, and just taking a more holistic approach to my disease and life. After about a year, I finally came off all of my pain medication and any other medications that weren’t really helping with my disease anyway. Then, I started working on what my purpose is in this life.

How have you worked on what your purpose is in this life?

I got my life coaching certification, and I became more involved with advocacy regarding this disease. I’ve also become involved in helping others live with scleroderma or other autoimmune diseases, as opposed to just surviving.

With the coaching I do, it’s centered on working on underlining trauma issues that may be causing the disease to flare up. Over the years, I have noticed the more stress I have, the more my disease flares up. Next, we find healthy habits to incorporate into daily life, such as journaling, meditation, diets, etc. Some people are drawn to more than one thing or take a while to figure it out once they can let go of certain things they’re holding onto that aren’t serving then. Then comes my favorite part: helping them find their purpose and living with autoimmune diseases, yet still doing what they love. Usually, sessions are weekly for 60 to 90 minutes. I give them things to work on, watch, or read before the next session, and then we set short and long term goals.

Personally, I recently took up jujitsu. I love jujitsu but was previously too scared to try because of my restrictions. However, we make modifications. I’m also currently working with a songwriter to turn one of my poems into a song (something I have always wanted to do), and I’m hoping to start a training course to be able to lead scleroderma support groups online.

I’m still in the hospital once a month for five days. I do prostaglandins infusions to help with my Raynaud’s. It’s still pretty bad, but my monthly infusions and port catheter definitely help. It’s tough on my family, but we’ve found our own “normal” in all of this, which makes it a lot easier.

What kinds of doctors have you seen, and what medical workups and treatments have you had?

I went through many rheumatologists before finally finding helpful ones. I’m treated at Toronto Western Hospital, and most of my other specialists (such as my GI and lung specialists and inertial medicine) work out of there as well. I’ve traveled to Baltimore to Johns Hopkins Hospital for a second opinion. That is where they suggested that I get a port catheter and do monthly prostaglandin infusions.

I’ve done hyperbaric oxygen treatment to help heal infected ulcers to prevent amputation. That helped, but it was a long painful process. I’ve also traveled to Miami to try stem-cell implants, where they took my own bone marrow and injected into my body. It was very painful and did not work.

I’ve received 3 sympathetic treatments where they cut into my nerves in my hands and in between my lungs. That helped. However, it was a temporary fix and not worth the long recovery.

Now, I try natural approaches. I’ve tried a raw food vegan diet, infrared sauna, reiki, hot yoga, and meditation. There are so many other healthier options out there. They may not cure me or have immediate physical effects, but they do wonders mentally, which in turn helps with everything else.

Have you experienced any difficulties with having children while dealing with your disease?

Yes, it’s very difficult! I have an amazing family and support system. I don’t know how I would do it without them. I really feel for people who don’t have much support, which is why I’m always willing to help them any way that I can.

Some days, I just cannot get out of bed – especially in the winter. There are lots of little things that I cannot do. Tying shoes, zippers, holding hands, grabbing things from them they shouldn’t have like iPads… But, I find ways to tweak things. My kids are aware that they have to be careful too.

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

I would ask them to find their “new normal.” I’d tell them that it is possible to still do the things they want to do, and more! Dream big and live hard!

It’s a lot easier for people who don’t live with chronic illnesses. The difference with us is that we just need to tweak it a little bit. I call this “tweaking scleroderma style.”

When we finally achieve the goals we set out to achieve, it means so much more because of how hard we’ve worked to get there, and we appreciate it that much more. Sometimes, it’s even the little things like being able to wear heels for a few hours and dance! Life is harder, but it will definitely taste a lot sweeter. We all have a purpose, a song to sing, and a story to tell. The question is what’s your purpose, what’s your song, and what kind of message is your story trying to tell.

Always remember the importance of self-advocacy. Do not let doctors or big words intimidate you. Ask questions, and if it doesn’t feel right, ask again until it does!