The Scleroderma and Fibrotic Diseases Foundation (SFDF)
SCLERODERMA STORIES
The SFDF presents Scleroderma Stories: a series of interviews with people living with scleroderma. PICTURED: SILVIA, INTERVIEW ON PAGE 1
SCLERODERMA Generally classified as an autoimmune rheumatic disease, scleroderma is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues – hence the name “scleroderma,” meaning “hard skin”. In some, scleroderma affects only the skin. However, in many patients, it also harms structures beyond the skin, such as blood vessels, internal organs, and the digestive tract. The exact cause of scleroderma remains unknown.
ABOUT THE SFDF In October of 2018, Lee Yu Chuan received a diagnosis of diffuse cutaneous systemic sclerosis after months of shortness of breath and cold fingers. He passed away four months later. The SFDF was founded in 2019 by Lee Yu Chuan’s granddaughter, Cosette Wu – a high school sophomore at the time. Before her grandfather’s diagnosis, Wu had never heard of scleroderma. Surprised that so many people (including herself ) could be unaware of such a devastating disease and wanting to help, she got together with some friends and started The Scleroderma and Fibrotic Diseases Foundation. The SFDF obtained 501(c)(3) status in December of 2019. In addition to directly helping the scleroderma and fibrotic diseases community, The SFDF aims to educate others. The SFDF spreads awareness with a goal of ensuring that more people can recognize the signs of scleroderma and understand the importance of research into scleroderma and other fibrotic diseases.
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THIS PROJECT While raising awareness, we met some amazing people living with scleroderma, many of whom shared their stories with us. This inspired a project that would bring these stories together into one place.
All photos in this publication were shared by our interviewees. Cover photo taken by Valeria Mitsubata www.valeriamitsubata.com @valeriamitsubataphotography
Beginning in January of 2020, The SFDF began a series of interviews that have culminated in this publication, titled “Scleroderma Stories.” Scleroderma Stories features the journeys of people living with scleroderma in states from the east to west coast as well as in other countries, such as South Africa and Canada.
Interviews have been edited for length and clarity.
This project aims to inspire those affected by scleroderma and help them understand that they are not alone. Scleroderma Stories also aligns with The SFDF’s mission of spreading awareness about this rare disease.
WHAT’S NEXT? Visit our website, Volunteer, or Donate: www.thesfdf.wixsite.com/foundation
Follow us on Instagram: @sclerofibroticfoundation
Follow us on Facebook: @theSFDF
Contact us
sclerofibroticfoundation@gmail.com
Would you be willing to share YOUR Scleroderma Story? Or, do you know someone with their own Scleroderma Story? In continuing our mission, The SFDF would love to publish a second issue of our Scleroderma Stories. If you (or someone you know) would be willing to share your story, please contact us by email, Instagram, or Facebook. We look forward to hearing from you.
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SCLERODERMA STORIES 1
SILVIA PETROZZA
5
RACHEL LANDO
7
JENNIFER ADDINGTON
9
RAELE ROBISON
Toronto, Ontario (Canada)
Utah (United States of America)
Near Kansas City, Kansas (United States of America)
Madison, Wisconsin (United States of America)
13
CHRISTINE HAINES GREENBERG
15
JULIANA VISCARDI
Richmond, Virginia (United States of America)
New York City, New York (United States of America)
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19
TONYA MOORES
21
MICHELE BARILLA
23
JOVANA PLACIDO
27
SANDRA NUÑEZ
CONTENTS
TRACEY DE KLERK
TABLE OF
17
Queenstown, Eastern Cape (South Africa)
Newfoundland (Canada)
Southern California (United States of America)
San Antonio, Texas (United States of America)
Florida (United States of America)
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SILVIA PETROZZA After turning her narrative around, Silvia lives as a life coach and advocate in Toronto, Ontario (Canada). 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
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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.
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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.
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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! PHOTOS FAR LEFT Silvia outdoors, enjoying the sunshine IMMEDIATE BELOW Silvia in the hospital
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A recent anatomy geek also interested in yoga, pilates, reading, and independent film, Rachel lives in Utah (United States of America) with her husband, daughter, and pup.
RACHEL LANDO 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.
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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. PHOTOS IMMEDIATE RIGHT Rachel, her husband, and their daughter
What lifestyle changes have you made?
What mindset 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.
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.
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 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.
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JENNIFER ADDINGTON Jennifer has lupus and scleroderma and lives near Kansas City in Kansas (United States of America). Please introduce yourself My name is Jennifer. I am 49 years old. I was diagnosed with lupus at age 18 and began developing scleroderma in 2008. I am married with two kids: a 23-year-old son and an 18-year-old daughter who is a freshman in college. After divorcing for three and a half years around our 10th anniversary, my husband and I have been happily remarried for 10 years and counting. We live in Kansas, not too far from Kansas City. I enjoy decorating for events, home decor, artsy stuff, photography, social media, inspiring people, and my family and church. I also love to travel.
What happened after you were diagnosed? I ended up having to take several months off due to severe illness and gangrene in two fingers. I had worked in the Mental Health field for 13 or so years as an office manager, but then I was failing. My doctor advised me to quit working and spend time with my family. I spent 3 years or so on the couch sleeping, pretty much. But, now I am working part-time at my church so I can have social interaction and a reason to get out of bed.
What symptoms did you have at the time of diagnosis? I had major swelling of my limbs and tightness of my skin. My belly was hard, and the skin on my neck, face, chest, and hands was hardening. On both hands, my fingers curled in. I ended up with digital ulcers for the first time when my Raynaud’s got out of control. I had extreme itching all over as well as difficulty swallowing. I would wake up at night with acid shooting out of my throat. My mouth shrunk, and my face changed, which really affected my self-esteem. I also experienced shortness of breath. I’m sure I can think of more with time. I felt terrified. My doctor said I was gravely ill, and we were praying that I wouldn’t die. I felt alone and isolated because this disease is so rare. It felt like I had zero control over what was happening.
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How has scleroderma affected you mentally and physically? It has been very difficult. I had mostly learned to cope with lupus, but scleroderma brought about physical changes that also caused mental anguish. I lack the confidence I once had, for numerous reasons; one being the way I look, and the other being that I often cannot do what my mind wants to do because I don’t have it in me physically. Stress of any kind is bad for me. I am much more protective of my time and energy. When I know I need rest, I rest, for the most part. I know in advance that the extra stuff I do will cause stress and induce flares, so I try to be selective about what I put my energy towards. Having an extra disease to deal with has definitely slowed me down, but it has also made me appreciate each day that I wake up even more. Scleroderma has so many complications that come with it that I often fear that I won’t wake up. But, my faith and my support system help a lot.
PHOTOS FAR LEFT “These photos show how my mouth has shrunk, therefore showing much more teeth. I also kind of have the beak nose now,” Jennifer said. ABOVE LEFT Jennifer and her family at Christmas 2019 BOTTOM LEFT Jennifer and her family at Christmas 2016 FAR ABOVE Jennifer and her husband at the 1998 Capture The Spirit Gala, when Jennifer was 27 and had a two-year-old son IMMEDIATE ABOVE Jennifer one year ago
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Raele, a researcher studying swallowing disorders, lives in Florida with plans to move to Madison, Wisconsin (United States of America).
RAELE ROBISON Could you please tell us a little about yourself? I am originally from Bethlehem, Pennsylvania, which is affectionately known as the “Christmas City”. I moved to Florida in 2013 to pursue a masters in speech pathology at the University of South Florida and now am finishing up my doctorate at the University of Florida. My passion is research, and I currently study swallowing disorders in people with ALS (or Lou Gehrig’s Disease). I will be moving to Madison, Wisconsin in March after I defend to research swallowing in Alzheimer’s and the frail elderly. My hobbies include nature walks with my new puppy, Fred, and trying all different types of restaurants with my close friends!
What led to your diagnosis? I was diagnosed in March of 2017. My symptoms started in April of 2016 with daily hand swelling. I went to see a primary care physician who then sent me for blood work. My antinuclear antibody (ANA) test came back positive, so she recommended I see a rheumatologist. I saw the rheumatologist in July, and he ran a whole bunch of tests that didn’t show anything. He told me to return in a year. Between October and December, I had increased muscle aches, fatigue, and skin discoloration. I also noticed that my skin was really tight in some areas,
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leading to a reduced range of motion. In late December, I had trouble breathing that got progressively worse. By late January of 2017, my friends were driving me to class because I couldn’t walk ten steps without needing to catch my breath. I went back to see the rheumatologist, and he diagnosed me with scleroderma. Then, in April of 2017, I got diagnosed with pulmonary hypertension and did one year of continuous IV therapy to treat that.
longer the person I was before, either physically or mentally. I have to approach a lot of situations from a standpoint of “will I be able to do this?” whereas before I didn’t have to put much thought into it. The biggest change has been my stamina levels. I get tired easily, so I have to structure my days in ways that allow for rest. Thankfully, my line of work is really conducive to my needs, so I’ve been able to make scleroderma “work” for me.
How did you feel after being diagnosed?
Do you experience any difficulties in completing tasks required by your research work?
I was really scared after being diagnosed. I hadn’t heard of the disease before being diagnosed, and I read a lot of scary things about it after my diagnosis that made me feel really anxious and fearful.
The line of research that I conduct is more mentally demanding than physically, so I usually don’t encounter too many difficulties.
How has this disease affected you? Scleroderma has affected my entire life, as I am no
As I mentioned, a big obstacle for me is just energy, as I find I can only work maybe four to five hours per day. So, I try to structure my weeks (meetings, writing, etc.) to accommodate my energy levels. PHOTOS FAR UPPER LEFT Raele, her boyfriend, Devin, and their dog, Fred, during a visit to Raele’s undergraduate college alma mater, West Chester University FAR LOWER LEFT Raele at the top of Sauk Mountain after a successful climb to the summit IMMEDIATE LEFT Raele presenting research at the 2019 Northeast ALS Consortium Meeting in Clearwater, FL, doing a “gator chomp” in the picture because it was her last time presenting at the conference as a UF gator
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What kinds of doctors have you seen, and what medical workups and treatments have you had? I have seen a dermatologist, rheumatologist, two GI specialists, and pulmonary hypertension specialists. For rehabilitation, I work with an occupational therapist, a massage therapist, and two physical therapists (one who does manual manipulation therapy and one who focuses on TMJ* for my reduced mouth opening). Previously, for my pulmonary hypertension, I was on a continuous IV therapy called Veletri. I transitioned off of that in 2018 to Uptravi. Since my PH diagnosis, I have also taken Opusmit and Adcirca. For scleroderma, I take Cellcept. I have had a lot of tests and procedures done, including right heart catheter, chest x-rays, hand x-rays, pulmonary function tests, six-minute walk tests, and a whole bunch of blood work that I do monthly for the Cellcept. *TMJ: Temporomandibular joint dysfunction
What treatments have you found most helpful? The Veletri medication definitely saved my life – I truly believe that. Outside of medicine, definitely working with my physical and occupational therapists has been the most helpful. I have myositis associated with my scleroderma, and they’ve really helped me regain some of my physical function and range of motion.
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What advice do you have for those with scleroderma or other chronic illnesses? I would say my biggest piece of advice is to take charge of your story. When you have an illness, I think it’s easy for people to place you into a box of what you can and cannot do, and the disease starts to dictate your life. But, I think all of us living with a chronic illness should feel empowered to change the narrative and show the disease what we are capable of.
PHOTOS FAR LOWER LEFT Raele in her papason chair after a long day of dissertation writing FAR UPPER LEFT Raele and her mother, Linda, when she visited Raele in July of 2019 in Gainesville, Florida IMMEDIATE BELOW Raele, her boyfriend, Devin, and his late dog, Teko, at the trailhead for Sauk Mountain in Washington in August of 2018. This was Raele’s first time hiking a mountain, and she did so a year and a half after being diagnosed with pulmonary hypertension.
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After growing up in Germany as an army brat, Christine now lives in Richmond, Virginia (United States of America) as the owner of Urban Set Bride and the Hive Wedding Collective.
CHRISTINE HAINES GREENBERG Could you please tell us a little about yourself? I live in Richmond, Virginia, but I grew up in Germany as an Army brat. I came to Richmond for college in 2003 and have lived here ever since. I own a bridal shop and wedding planning company with my mom. I am married with a 3-year-old little boy and another little boy on the way (due in March). Owning two businesses means I do not have a lot of time for hobbies, but I love spending time with my family, enjoying wine and trashy TV with my girlfriends, reading, and traveling. I was diagnosed with scleroderma in 2013 when I was 28 years old. I have had Raynaud’s symptoms since 2010. Embarking on another pregnancy with scleroderma (and I am now showing signs of lupus in my blood) was scary, but I have a wonderful husband, parents, friend group, and team of doctors that support me. I eat well, focusing on anti-inflammatory foods as much as possible, and keep my body as healthy as I can. I have mild lung damage but, thankfully, no other major symptoms (yet). My goal is to stay active with my doctors and stay positive with my outlook on things.
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How did you feel after being diagnosed with scleroderma? I was terrified. And angry. I felt like I would rather have cancer or something that can be battled. Many lose the battle with cancer, but at least they have a chance to have surgery or undergo chemotherapy/ radiation to try and combat it. But, with time, you have to accept the reality and do what you can to keep pushing forward. We do not know how or when the disease will progress; controlling what I can and not worrying about the “what if/when” is all that I can do.
How have you made changes to your lifestyle or mindset? I switched all of my medical care to one hospital system (a teaching hospital) so that all of my doctors (primary care, rheumatologist, OB/GYN, and pulmonologist) can all easily communicate with each other. We have also had to adjust our household finances to prepare for large medical bills as I have breathing tests and a major CT lung scan annually. As a small business owner, I do not have reliable healthcare available to me. Luckily, my husband has a full-time job with a huge company, so I can rely on that for consistent insurance coverage. But, to not lose his job or switch companies abruptly is a heavy burden for my husband to bear. We anticipate around $10,000 of out-of-pocket expenses to manage my scleroderma... and that is if it maintains the mild levels of lung damage and Raynaud’s issues in my fingers.
What medical workups/treatments have you had in addition to annual breathing tests and CT lung scans? That is all I have done so far. I take a daily aspirin and medicine to hopefully keep the lupus at bay, but we are holding off on anything more aggressive until I am finished with this pregnancy.
What advice do you have for those with scleroderma or other chronic illnesses? Don’t suffer in silence. I talk about my autoimmune diseases to spread awareness about invisible illnesses and to educate people, especially women, about paying attention to odd symptoms... don’t just chalk it up to getting older. Be your own advocate, but do not let the disease define you. You still have a full life to live. Enjoy every bit of it! There is no shame in having some bad days where you feel sorry for yourself. Take care of yourself on those days – eat the ice cream, watch the bad TV, whatever your guilty pleasures are. But you are more than your illness. Keep fighting, stay active in the research and support communities for your disease, and stay educated. PHOTOS FAR LEFT Christine, her husband, and their threeyear-old son
I have adjusted my diet to focus on the healing properties of fruits and vegetables. I try my best (without removing all joy from my life) to prioritize anti-inflammatory foods, herbal supplements, limiting meat, dairy, gluten, etc.
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“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.”
JULIANA VISCARDI Juliana lives in New York City, New York (United States of America) as a mother of two. How has scleroderma affected you? 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
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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!
PHOTOS IMMEDIATE BELOW Juliana (middle) with her children, Victor and Manuela at a Scleroderma World Day celebration in 2019. Viscardi coordinated 10 groups in Brazil (virtually) for the first time after 11 years of existence of ABRAPES, the only group in Brazil that spreads awareness and advocates on behalf of patients.
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TRACEY DE KLERK Tracey lives in Queenstown, Eastern Cape (South Africa) with her husband, Steve, and two parrots, Snoopy and DJ. What led to your diagnosis? It happened in 2014. I was coughing constantly, so my doctor had me tested for TB. Then, I started having body pains so bad that I could not get out of bed. My doctor referred me to Port Elizabeth, a big city where they have better medical facilities and specialists. I had two specialists, a pulmonologist and a rheumatologist, look me over, and they suspected scleroderma. All of my blood tests came back normal, but my chest x-rays and CT scan showed a problem with my lungs. They booked me into the hospital for a lung biopsy, and the results came back positive for scleroderma. The doctors put me on Prednisone and an autoimmune suppressant.
Could you please tell us how you felt after being diagnosed? I had never heard of this disease and was in absolute shock. I just could not get over the fact that I had this fatal disease as I had been so healthy my whole life. It was so devastating hearing this news. PHOTOS IMMEDIATE RIGHT African Grey, “DJ” TOP RIGHT Indian Ringneck, “Snoopy” BOTTOM RIGHT Tracey and her husband, Steve
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In what ways has scleroderma affected your lifestyle or mindset? I have been a teacher for 23 years, but in March of 2019, I had to resign from my job. My lungs got so bad that I could no longer cope with work. During the summer, it is easier for me to get out and do things, but winter is not pleasant. I don’t go out much in the winter. I still struggle at times to come to terms with this disease. It is absolutely awful. I feel so hopeless and helpless at times, as I can no longer do what I used to. Even taking a shower has become a major hurdle.
What helps you stay positive and continue to fight this disease? I am married to an amazing man, Steve, who encourages me. I also feel extremely fortunate to have parents who are still alive, live close to us, and can also help and support me.
erwise, they may pop in when I am not capable of having visitors and will have wasted their time coming to see me. I suggest doing your shopping online and having it delivered to your house. I also recommend using cannabis oil if you can. It helps with pain and lets me sleep better at night.
What advice do you have for those with scleroderma or other chronic illnesses? Make sure your family and close friends understand this disease so that they can support you. Being honest about how you are doing is important. There is no use in telling your family that you are fine when you are not. They need you to constantly keep them informed in order to be able to help you. My friends know to phone me before they visit. Oth-
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TONYA MOORES With her three children (16year-old Makayla, 14-yearold Coadie, and 9-yearold Riley), Tonya lives in Newfoundland (Canada). 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.
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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
“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.”
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. PHOTOS IMMEDIATE LEFT Tonya
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MICHELE BARILLA Living in Southern California (United States of America), Michele and her husband have a 16-year-old son. 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
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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 oneyear 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! PHOTOS FAR UPPER LEFT Michele and her husband
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Diagnosed with scleroderma at 14 years old, Jovana now acts as an advocate for the scleroderma community in San Antonio, Texas (United States of America).
JOVANA PLACIDO
Could you please tell us a little about yourself? I am 36 years old, and I was diagnosed with scleroderma in 1997 at the age of 14. My pulmonary involvement started at the age of 17, and it has been quite a journey. I am a huge advocate for the scleroderma community. My hobbies include decorating and coordinating events and fundraisers. I have also traveled to several different places to share my story with others. I truly enjoy spreading awareness, because it is so important. If I can talk to at least one person a day about this disease, then I’ve done my job. Everyone needs to know about the signs and symptoms and be aware. I was born and raised in San Antonio, Texas, in which I still reside. I am a wife and mother to two amazing boys. My family has been such a huge supporter of my journey. In our culture, family gets involved in everything, and they have always been so involved with my awareness efforts. I’m so blessed to have them, and they are a huge reason why I don’t give up.
What led you to take such an active role in spreading awareness? I decided to take an active role in 2008 after my life-saving stem-cell transplant. The treatment really saved my life, and I felt I needed to do more with my second chance at life.
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I have been nonstop ever since. I have made so many amazing connections and have shared my story with so many people.
Could you please share what led to your diagnosis?
How have you made changes to your lifestyle or mindset?
I was just 12 years old when my symptoms started. I played softball, and I was a great pitcher! My hands were beginning to feel stiff and painful, and they were swollen. My skin was tightening, and what I now know was Raynaud’s was horrible for me. I couldn’t grasp the ball to throw, and I couldn’t tolerate being outdoors. Due to my joint pain and fatigue, I wasn’t physically able to keep up with my teammates.
I’ve had to adjust to so many things in my life! If it’s too cold or even too hot, I stay in and preserve myself. That means having to miss out on things with friends and family, and they are all very understanding.
What effect do you think scleroderma had on your childhood?
This is the tough one, but I’ve had to learn to say no to others when someone needs my help. I am a people-pleaser, and I enjoy helping others in any way. But, it takes a toll on me. So, I don’t always rush to offer my help with weddings, showers, yard work, etc. anymore.
It had great effects on my childhood! I couldn’t play the sports I loved. I missed a lot of school, and my teachers didn’t really understand. My friends didn’t understand either, but there were two friends who absolutely became so supportive and never judged. They were really there for me. In fact, I’m still friends with them to this day. I didn’t get to do much of what other children did because I mostly stayed indoors and was too tired to enjoy anything. When my hands became affected, I knew I would never be able to play sports again.
I also had to pay attention to what foods were causing me more harm than good and eliminate those.
I’ve developed so much patience throughout the years! People ask me how I can still smile and be calm even through my bad days, and I just say “it’s just a bad moment, and tomorrow will be better.” The one-day-at-a-time mindset is so important. To relieve stress, I love to listen to music, read books, take walks, and take naps.
What is the most difficult part of living with scleroderma? The unpredictable days! I can feel amazing for half the day and then feel like a train hit me for the second half of the day. Not knowing how my days will impact me is so nerve-racking. I get emotional sometimes because I’m a person who loves to plan ahead and commit to an agenda. Knowing that I don’t have control over that makes me feel down sometimes. PHOTOS FAR UPPER LEFT Jovana wearing her “Scleroderma Warrior” shirt FAR LOWER LEFT Jovana in June 2019 at a rally to get research support from Texas state representatives IMMEDIATE LEFT Jovana and her older son
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Could you please describe the events leading up to and following your life-saving transplant? The events leading up to my stem cell transplant were quite scary. I felt like it was a race against time, and I needed to do something fast. In 2006, I started to deteriorate drastically, and it got harder and harder for me to breathe. Being on 24hour oxygen and in a wheelchair was so hard on me and my family. I didn’t have the energy to do anything – to be a mom and a wife and do the things that I should be doing to manage the household. Although I didn’t do all the testing for a lung transplant evaluation, my rheumatologist already knew I wouldn’t meet the criteria for a lung transplant, so we didn’t look into that as an option. We found out about stem-cell transplants being done for scleroderma patients in Chicago, and we just knew that was our chance. In May of 2006, I flew to meet Dr. Burt and did several days of testing: tons of blood work, cardiac testing, pulmonary testing, and more. He sent me home to wait for insurance approval. It took about 6 weeks for the call, but my insurance approved this transplant for me. I immediately started crying and knew the hard part was about to begin. The process was very long, and I needed to talk with my family about taking care of my son and my household while I was gone. We immediately started holding fundraisers and asking for help. It’s
hard to be able to buy necessities and pay for room and board in Chicago while you’re still paying for your own house back home. My parents willingly stepped up to care for my then 8-year-old son. No amount of pain, lack of energy or breath, or chemo side effects will ever match to the pain I felt from having to leave my son behind to go and fight for my life. THAT was the hardest part for me. My son knew I was his superhero, and he knew I was going to be okay. I arrived home on December 18th, 2007 after being away for almost three months. I was 50 pounds lighter, had lost all my hair, and was still in a wheelchair. I didn’t look the same, but I knew I felt ready – ready to start getting stronger and getting back to a normal life. Or at least try! Slowly, I was able to consume solid foods again, and I was able to maintain oxygen levels on my own. No more oxygen and no more feeding tube. I was starting to be more mobile because my energy was coming back! I went back to work six months after the transplant. I needed to start to contribute to feel some sense of normalcy. I met with a lady named Debbie with the foundation who was leading the support group in San Antonio. I started attending meetings and meeting more patients like myself. Debbie needed to step down and take care of her sick mother, so I stepped up to run the group as best as she did. It has been 12 years now, and I’m so excited to serve my state of Texas.
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What else did this “second chance at life” change for you? This second chance at life changed me as a person. I have more compassion towards people, I have more patience with others, I love harder, and I have a passion for helping others. It has allowed me to see the good in people and to always lend a helping hand. You never know what someone is going through, and you could be the only person who helps them. This new perspective on life is important to me. It’s my way of giving back as a way to say thank you. My faith has really made me strong, and I will never stop doing what I do best.
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. PHOTOS FAR LOWER LEFT Jovana during her stem-cell transplant FAR UPPER LEFT Jovana in her wheelchair BELOW LEFT Jovana at the beach IMMEDIATE BELOW Jovana, her husband, and son
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SANDRA NUÑEZ Sandra lives in Florida (United States of America) as a model and Guardian Ad Litem volunteer while running her blog, “Living La Vida Scleroderma”. When were you diagnosed? I got diagnosed in 2002, but I feel that I have had scleroderma my whole life. At the time, my kids were five and nine years old (now, they are 23 and 27). I was living in Las Vegas as a single mom. My hands were swelling up, and my joints were hurting. Once diagnosed, I got sick hard and fast. I had gangrene on both hands and almost lost four fingers. The doctors had me on a lot of medicine. I thought, that’s how my life was going to be, and then I’ll die. I had depression and anxiety – a breakdown.
How has your outlook changed since then? Eight years ago, I had a life-changing moment that caused me to get off my medications. I returned to working out and won a modeling contest five years ago. I became a body painted model at 49 years old and have done many shows since then. I model often for print. In the midst of my illness, I went to college and received my Bachelor’s Degree. For the past four years, I have volunteered for Guardian Ad Litem. I advocate for foster teens. My kids and all of the foster kids in the system are what drive me. I am no longer depressed or anxious. For the past seven years, I have had a blog on Facebook called “Living La Vida Scleroderma”. PHOTOS IMMEDIATE LEFT Sandra (middle) with her daughter, Yvonne (right), and her son, Michael (left). IMMEDIATE RIGHT Sandra modeling; Photo taken by Russ Garvey
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Could you please describe that life-changing moment and how it motivated you? It was a religious experience, so personal. Once I got off my meds, my mind was clearer, and I started feeling better. As for modeling, I’ve been modeling since I was 18 years old in New York City. Once my mind became clearer, I returned to it. Having my blog has helped me motivate my scleroderma community to not give up. They are what motivated me. I got tired of reading about people feeling like their lives were over. Because I was physically fit before scleroderma and I had been a certified aerobic instructor in the past, I knew all of the psychological benefits of a healthy lifestyle. That also motivated me to start working out again.
How has scleroderma’s effects on your appearance affected you and your confidence with modeling? Being a body paint model is what helped me tremendously love and see my body in a different light. When I first got sick, I had a hard time seeing my face and hands change. I was on a medicine called thalidomide that loosened my skin. My face became looser as well, moving from Las Vegas to Florida. When I got body painted, all people saw was the art. This helped me to see myself in a different light. Once I found something I love again, it caused me to exercise to be fit for model gigs. I got to the point where I don’t care what my hands look like. I accepted the change. Most people who know me didn’t notice my hands until I told them.
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What kinds of doctors have you seen, and what medical workups and treatments have you had? I have seen a cardiologist, rheumatologist, G.I. doctor… I haven’t had any other treatments. Other than thalidomide, they tried methotrexate; but, it was not good for me, and that was it.
What advice do you have for those with scleroderma or other chronic illnesses? To not rely solely on what doctors say. Do your own research. A positive attitude can go very far. Don’t dwell on what you once were able to do. Find love and passion in something new. I also want to share one more thing. I know I am very sick; I don’t pretend that I healed myself. I also don’t think that if you do what I did, you’ll get better. I just think that psychology and mental health play a big part in helping us cope and find other things to focus on.
PHOTOS FAR LEFT Sandra in a photo showing her hands IMMEDIATE LEFT Sandra with her pug named Max IMMEDIATE ABOVE Sandra on a sunny day
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SCLERODERMA STORIES - The Scleroderma and Fibrotic Diseases Foundation
PICTURED: SANDRA, INTERVIEW ON PAGE 27
