I have had Eosinophilic Fasciitis (EF) for about three years now. But it was only diagnosed last November. When I was being diagnosed my family and I had to go to Washington D.C. for a week to see this doctor.
Before I went, I had a skin biopsy done. Right before they were about to take some of my skin they did not even know if it was possible to take any because the skin on my leg was much more tight than it should have been.
This disease affects my movement, but more in my hands than any place else. It was hard to tell my parents about this. They have only known about the EF for about the last year. I am on this certain medication that makes me sick to my stomach every week when I take the stupid pills.
When I first started to get EF, I would have a lot of nose bleeds. Then my range of motion started to get less and less. I was so scared, but now I am not nearly as afraid.
Sometimes I still worry about myself and about how my parents are dealing with this. Once I heard my mom crying in the other room (It was in the middle of the night) and it hurt me so bad that I was causing my mom to cry herself to sleep, because so many times that was me crying myself to sleep, almost every night.
I am still very sensitive talking about it mostly because it scares me half to death and also because I am still getting used to having this disease.
Story edited 08-02-06 JTD
Story posted 08-23-06 SLE
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