Columns

Why those of us with scleroderma need patient-centered care

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…

Is it normal aging, or is it related to my scleroderma?

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…

How advocacy work helps me embrace living with scleroderma

Living with scleroderma has resulted in many new experiences, opportunities, and challenges for me. Since my diagnosis in 2001, I’ve spent much of my time educating others about how to manage symptoms, decrease stress, process mental health issues, navigate treatment options, and improve quality of life.