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Beth R: Eosinophilic Fasciitis

It wasn't until my skin became bumpy that my doctor finally realized what I had.

I was diagnosed with Eosinophilic Fasciitis almost a year ago. My symptoms came on very suddenly and started with my muscles being so sore it was hard to move. From there my skin got very hard and tight and eventually my upper arms looked like an orange peel.

It wasn't until my skin became bumpy that my doctor finally realized what I had. The diagnosis was made after a muscle biopsy was done.

My doctor started me on 60 mg. of prednisone and slowly tapered me down to where I am now, 3 mg. a day. I was due to come off the prednisone this week, but after my latest blood work, I was told my Eosinophilic were starting to increase again.

I have come a long way since last October, but I am still far from being normal. My arms and legs are still tight and I still cannot make a fist.

I would love to hear from anyone who has this unusual disease. In particular, I am wondering how people are doing now after previously having Eosinophilic Fasciitis.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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.