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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…

As we get older, how can we tell the difference between the effects of aging and the symptoms and comorbidities related to scleroderma? When most people think of scleroderma, aging with the disease doesn’t immediately come to mind. When I first read about it in 1974, patients with the…

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…

I love to have conversations with strangers and tell them about scleroderma. I take time during brief encounters at the library, supermarket lines, the nail salon, and airport gates. The challenge is to provide the information in two minutes or less to spark and keep the listener’s attention. I…

The face is what people see first on someone, and something is happening to mine because of scleroderma. I’m not a vain person or someone who primps in front of the mirror all the time. However, some small changes are starting to appear on my face. Scleroderma will snatch…