Scleroderma: Road Under Construction — Tomisa Starr

As someone with scleroderma, I’ve experienced multiple types of loss. There’s the unique grief of living with a chronic illness: I miss my life before scleroderma took hold, I miss the way my…

When I was diagnosed with scleroderma, I cried. I wondered, “What is going to become of me?” I didn’t feel brave. I felt helpless and afraid. My scleroderma symptoms didn’t come all…

I had a chest CT scan in April 2024, and then another one last March. I’m experiencing a bit of anxiety and uncertainty about the most recent scan. There are some things about having…

For many years before I was diagnosed with scleroderma, my skin was normal but I had joint pain. This was while I was still a child. During childhood, I may have had circulation…

This year, after 30 years of being unable to access treatment for my scleroderma, I began taking mycophenolate mofetil, an immune suppressant, for the disease. The last time I’d been able to access…

For those of us with scleroderma, it’s important to stay warm, because changes in body temperature, especially when exposed to the cold, can cause blood vessels to constrict. I like to go…

I think of scleroderma as my constant companion — one that tries to keep me from having a life of my own. Whenever I want to do anything outside of my home or…

Years before my scleroderma diagnosis, I was a fighter. I was born almost three months premature and came into this world fighting. One of my maternal grandmother’s friends asked her if I would…

I’m 61 years old and live in a city over 100 miles away from a scleroderma care center. I’ve been diagnosed with the disease several times over the past 30 years, and it…