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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 discontinued. At the time, I didn’t know why. Not long after that, my symptoms returned and steadily worsened. I spent the next 20 years asking for trea…
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