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Faces of hope

Sylvia’s Story

I had no idea how Raynaud’s would become a crystal ball into my future. Raynaud’s phenomenon was not new terminology for me as I had been having intermittent attacks since I was a teenager, but during my mid thirties the severity of attacks steadily increased involving both my hands and feet.
I had always been very fit, having taught fitness classes after work since my early twenties. So the random joint swelling, pain, the incredible fatigue, skin tightening, rashes on one side of my body for a few days at a time and itchy fingers raised significant red flags for me. My feet became so painful I had difficulty walking let alone teaching step/weight classes. Along with verbal cues, I always snapped my fingers to let my fitness participants know a change was upcoming. All of the sudden I was having difficulty with the ’snap’.  It didn’t take much longer for the day to arrive when I couldn’t snap my fingers anymore. The skin on my hands had tightened too much and this was the beginning of my fingers being forced to curl and disfigure. The year was 1999.  
By year 2000, 1 short year later, my symptoms were like a runaway train. I had a background in science and was not a stranger to research. I turned to the (then) fairly new technology of the internet. When I read about Scleroderma, specifically the horrible itchiness and skin tightening, I knew I had found the answer. I was originally diagnosed with CREST syndrome, although that changed. All aspects of life as I had known it came to a screeching halt. I could no longer adequately perform my job in the finance department of Kootenay Lake Hospital and went on long term disability. I had to quit my fitness activities. The fatigue had me spending most days bed ridden, the outrageous itching spread over my entire body (lasting many years) along with severe skin sensitivity. My hair hurt, even the ambient air on my skin was painful.
The following 8 years were a blur. My kidneys failed within 3 years of diagnosis for which I spent 6 weeks in hospital. My weight plummeted over 20lb to 100lb. I developed watermelon stomach causing constant anemia and blood loss of approximately 1 unit of blood/week. Without blood transfusions at least biweekly for about 10 years I wouldn’t be alive to tell you, my story. I had 20+ gastroscopies with laser trying to stem the bleeding.
Eventually, I started receiving EPO injections which allowed my body to slowly begin manufacturing more red blood cells. The ratio of blood manufacturing to blood loss became almost equal and I haven’t needed transfusions for about 5 years. This was revolutionary for my day to day to life and something I am so thankful for.
During the course of managing my disease I have experienced multiple finger surgeries, ulcers, calcinosis, numerous serious infections, months of IV antibiotics, hospitalizations, reflux, major pain management, ongoing gastrointestinal challenges, food issues, weight loss, skin tightening and thickening.  I saw so many specialists, including Dr. Furst (then in Seattle) and those at the Scleroderma Clinic at St. Paul’s in Vancouver and Dr. Erin Browne, plastic surgeon specializing in hands.
Some of my early symptoms eventually backed off. After several difficult years the skin itching eventually became intermittent, the pain greatly reduced, and my blood loss and blood pressure were under control. After having spent so much time in bed I was weak and unstable, sometimes accessing a wheelchair; I needed to teach myself how to walk again. I used a walker (short term), progressed to a cane, then walked holding the cane (my security blanket!) but not using it and eventually left the cane at home.  I now walk, even mildly hike on a regular basis.
My husband, dog, family and most of all, my fabulous home care nurses and doctors all gave me undying support. I’m so thankful. Do I still have numerous ongoing symptoms? You bet I do, but from the get-go I decided Scleroderma wasn’t going to get every itty-bitty part of me. I was going to fight. To quote a line from the movie ‘Shawshank Redemption’, “you either get busy livin’ or you get busy dyin.” Well, I certainly wasn’t going to settle for option number 2.

I cautiously rejoined life in ways that were ‘Scleroderma Friendly’. I became a SABC member, signed up for the Sclerodata newsletter and eventually became the Community Representative for the Nelson area. I read articles and found links to other resources. These were people who were living in my world and spoke my disease language. It was and still is a way to stay connected and informed, especially since there is no support group in my area.
Fast forward to 2020, the onset of the pandemic. In the Sclerodata I had read about the SPIN/SSLED course being offered. Rosanne Queen reached out to me, encouraging me to sign up; not only because they wanted all community reps to have the training, but also for the educational/leadership benefits for anyone living with scleroderma.  So at the beginning of 2023 I decided I would like to become more involved with SABC and a good starting point was enrolling for the online SPIN/SSLED program.  I’m so glad I did!  For 13 weeks, one day per week, my group met virtually.  The course was really well done and is a free resource anyone with Systemic Sclerosis can sign up for.  I’m now helping out with co-facilitating some of the SABC monthly virtual support group meetings, getting to know the other dedicated people involved and connecting to the broader Scleroderma community.
The more smiles and laughter the better. Scleroderma continues to throw me curve balls and will never be something that comes to a close.  It remains poorly understood and only other people experiencing the disease can fully grasp the broad impact it has on our lives, making connection with those individuals even more special.  Yet I don’t want Scleroderma to be the definition of my life.  I count my many blessings every day, strive to live as “normal” a life as possible, and care about the quality of my days rather than the quantity!   We’re all in this together and hopefully, one day, there will be broad medical advancements to address this difficult disease.