I've Lived with Scleroderma for 20 Years
"I feel very fortunate to have made it this far!"
I was diagnosed with systemic diffuse scleroderma in 1993. I started showing signs in late 1992. The disease attacked me aggressively with almost total skin invovement and gastro damage top to bottom. After 7 years, I went into a spontaneous remission and my skin softened. I had a few good years with just the gastro involvement and meds to control other symptoms. Then, the disease reactivated in 2010, this time involving my skin again and lungs. I have mild PAH and pulmonary sclerosis. Between Tracleer and Cellcept, the disease has leveled off again. My pulmonary issues are mild thanks to those two important meds. I am on a myriad of drugs which all keep me going. I'm retired and I'm back to volunteering and handling raptors and other wildlife. I feel very fortunate to have made it this far!
Dr. Nora Sandorfi is my scleroderma doctor. In the past I saw Dr. Sergio Jimenez. I live within half an hour of the Jefferson and Penn in Philadelphia. I'll be 68 years old in Sept and have lived with scleroderma for 20 years.
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