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Sandy: Diffuse Scleroderma

My disease progressed rapidly.

After years of complaining about various symptoms to doctors, I was diagnosed with diffuse scleroderma in 1993.

My family doctor stated that he was not qualified to treat me and sent me to a research and teaching hospital for treatment. The rheumatologist and dermatologist that treated me were wonderful in trying to explain to me all of the symptoms of scleroderma.

Within the first month of diagnosis, the tight, shiny skin appeared on my chest, belly, upper legs, arms and face. I was placed on D-Penicillamine in hopes of slowing the progression of the disease. I was also placed on an antidepressant, something for the acid reflux, pain and anti inflammatory medication. My disease progressed rapidly. Within months it became difficult to walk due to muscle weakness and fatigue. My hands were so swollen it hurt to grip a pencil. I was devastated because I was a school teacher. I could no longer go outside for recess because of the Raynaud's.

I had a severe reaction to the D-Penicillamine and had to be taken off of it. The rheumatologist then placed me on Methotrexate. I tolerated it well but after one year decided to quit the Methotrexate as I had mouth ulcerations and had dropped weight.

I went along well for the past four to five years and even thought I had the major organ malfunction beat. This past week, I found out I am in partial kidney failure. Through careful monitoring of my blood pressure and medication, I hope to avoid dialysis.

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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.