Faces of hope
Rosanne’s story – Living with a disease that has no cure!
When you’re told upon diagnosis you might only have five years left because of a disease with a name you can barely pronounce, it changes you in ways you could never expect.
Every day, I’m reminded of the conditions I carry with me: Raynaud’s, Scleroderma, Rheumatoid Arthritis, Sjogren’s, GERD, Interstitial Lung Disease, and as of March 2025, I will be a two-year breast cancer survivor. Living with these challenges has shown me just how fragile life really is.
We all need to keep healthy and participate in life. That I am still able to ride our tandem, now with a motor, and see the world, while getting in the ever-important exercise for my overall health, demonstrates my control over my destiny.
The journey hasn’t been easy. In 1992, when my doctor first diagnosed me with Raynaud’s Syndrome, I had no idea what it meant. Raynaud’s causes my blood vessels to constrict, especially in my hands and feet, turning them white, purple, blue, and finally pink again. Keeping my body warm is constantly an issue even during the summer with those lovely summer breezes and air conditioning.
In 1997, I was diagnosed with scleroderma, and my world turned upside down. My then, rheumatologist explained that “scleroderma causes hardening of the skin and organs”, and he warned me I might have a few years left. He advised me “to return if my symptoms worsened so he could help keep me as comfortable as possible”. I was stunned, at that time, my only symptom was a slightly thickened skin patch on my thumb!!
After sharing a good cry with my husband David, I resolved not to give up hope. Instead, I chose to live fully and find joy wherever I could. I’m not one to sit back and let life happen to me. After the diagnosis, David and I decided not to wait to live our lives. We crafted a bucket list and set our sights on tandem cycling and travelling. Though I’ve lost strength and dexterity in my hands and wrists, my legs remain strong, and my spirit is determined.
Our trips have taken us through the diverse landscapes and cultures of Australia, Ireland, France, Denmark, Germany, Austria, and even close to home. Without the bike, we have travelled to Italy, the UK and Africa. This journey has been about more than just seeing the world—it’s about experiencing the fullness of life together, against all odds. Staying active has been essential for my health, and with an electric motor now added to our tandem, I’m grateful I can still experience this joy while keeping my body strong.
Every day, I’m thankful for the love and support of my husband, David, as well as our family, friends, and my incredible medical team—rheumatologist, gastroenterologist, family doctor, chiropractor, massage therapist, physiotherapist, and podiatrist.
Over the years, scleroderma has definitely left its mark on my body—on the outside: swollen hands and curled fingers, calcinosis, ulcers, a tightened face and on the inside: acid reflux that makes swallowing difficult. Do I worry about continuing to see my fingers become shorter due to a lack of blood flow? Of course I do, but I’ve also learned that worrying doesn’t change a thing.
In the meantime, I continue to laugh, love, and savor good food—sometimes in small bites, but always with deep appreciation. Each challenge has taught me resilience and the power of finding the silver lining. With the right balance of medication, exercise, and a positive outlook, I manage the daily pain and discomfort while maintaining a fulfilling quality of life. So, when people ask how I’m doing, my answer is always, “Could be worse, so life is good!”
After 27 years with this disease, here’s what I’ve learned: Don’t rely on Dr. Google. Make sure you’re getting information from trusted sources. SABC provides excellent, up-to-date resources. Connect with the scleroderma community; they are knowledgeable, supportive, and incredibly positive.
And most importantly, remember that each of us is unique. Don’t assume you’ll experience every symptom, there will be good days and not so good days. Don’t focus on statistics like the five-year mark – I’m living proof that anything is possible!!