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Karen H: Eosinophilic Fasciitis

My symptoms first began as pain in my shoulders.

I have been living with Eosinophilic Fasciitis (EF) for about eight months now. My symptoms first began as pain in my shoulders. I went to my doctor who said I needed physical therapy.

Soon after, I started noticing swelling in my upper arms. It was a large, hard knot. I could feel heat coming from it. After several visits to several different doctors, a rheumatologist ordered a muscle biopsy which revealed my results.

By then I was having severe pain in both shoulders, wrists, hips, knees, and ankles. I was treated with Prednisone which greatly resolved my pain for a while. I have now had to come off of it due to osteoporosis. I am experiencing extreme fatigue and muscle pain on a daily basis.

I have somehow continued to work but it is becoming increasingly harder to do my job. I am still in the process of being treated and am not sure how long this disease will last. I am only thirty years old and I have three children. I would love to be able to get on with my life. I do not want to give up my career that I have worked so hard for but I am not sure how much longer I can live like this.

I hope this story helps someone else like the ones I read have helped me. Since this seems to be so rare it is a comfort knowing that someone else can relate to what I am going through.

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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!

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