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Julie: Morphea Scleroderma

I am now thirty-two years old and have had morphea scleroderma for almost twenty years. Unfortunately, it has not stopped and it has taken over a lot of my body: my stomach, back, right arm, both legs, right hand, both feet, and neck.The morphea is mostly dark in color with some being white and plaquelike.

I was on medication for almost ten years with little to no effect. When I started having children, I had to stop the medicine. I have also tried PUVA light treatments, but to no avail. I now receive cortisone shots into the lesions every time a new lesion appears, which is hard to tell because they are so widespread.

I am done having children now and am looking for something else to try. I am interested in experimental treatments aside from just using makeup to minimize the existing scars.

I feel very emotional about this at times, but I am grateful that, so far, I do not have any internal problems.

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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!

This Story is Featured in Voices of Scleroderma Volume 1

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