Scleroderma: Road Under Construction — Tomisa Starr

Note: This column describes the author’s own experiences with mycophenolate. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve been taking mycophenolate for nine months now. An immunosuppressant, it is used to treat interstitial lung disease and…

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 body used to be, and I miss being “normal.” I also miss my friends who have…

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 at once. Shortness of breath and fatigue — symptoms of interstitial lung disease (ILD) — came…

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 a rare chronic illness like scleroderma that I just can’t control. This frustrates me because…

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 problems, because my hands and feet were always cold. But I hadn’t yet experienced the numbness…

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 treatment, I took an antifibrotic medication. After my symptoms improved, though, my treatment was…

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 for walks to get exercise and maintain my lung function. My exercise “Goldilocks zone” — my…

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 lead a productive life, scleroderma always seems to hold me back. It’s like the friend I…

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 live. “She’s too ornery not to,” my grandmother said. Even then, she knew I was a…

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 took me an equal amount of time to get referred to the Stanford University Scleroderma Center…