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Jerry: Systemic Scleroderma

I woke up one morning and was unable to get out of bed.

Hi. My name is Jerry. I was diagnosed in 1999, with systemic scleroderma.

I woke up one morning and was unable to get out of bed. After I got help from my partner, I recovered and went on to work. (I was a respiratory therapist at a local respiratory care hospital.) I told one of the doctors what had happened. He suggested that I see a rheumatologist, which I did.

After a jillion tests I was told I had scleroderma. After twenty-five years in the medical field I thought I had seen and heard it all. Obviously I had not. Of course the rheumatologist told me about the disease and suggested I consult with my primary doctor.

My doctor did not believe the rheumatologist's diagnosis and did his own (jillion) tests and came to the same conclusion. He said that there was no known cause and no known treatment.

I returned to my rheumatologist and she suggested a copper-based medicine. It helped for awhile, but then stopped working. Then she tried an anti-immune medication and this has slowed my progression down for five years. However, due to the cost, I had to stop taking the medicine three months ago.

Since then the scleroderma has come back with a vengeance. I am going to the doctor in February and hope to get a "medically necessary" prescription so Medicare Part D will help pay for it.

The worst symptoms so far have been a terrible increase in pain, constant spasms in my hands and legs, and stomach and colon problems.

I will report back later if anything is resolved.

So long, and live large!

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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.