I'm a thirty-year-old woman with CREST Syndrome. I have been living with this disease for eleven years now. I was first diagnosed when I was nineteen years old with Raynaud's Phenomenon. My hands would turn blue all the way up to my wrists. I could barely do anything with them.
I spent two business days at the University of Iowa's Rheumatology Clinic before they diagnosed me. I was fortunate to have lived in the area, so I could go back pretty regularly.
I had a wonderful doctor who let me know that I might develop Scleroderma as a result of the Raynaud's. However, he could not give me any definite answers as to when this might happen. I did get the disease about a year later when my hands began to swell. We started treatment of the symptoms I was having, and little by little I started stabilizing.
We had no idea what form of the disease I had for a long time. But luckily I did not have systemic sclerosis.
The biggest problem that I had was with the ulcers on my fingers. I went through what is known as a hyperbaric chamber. This actually pushes your blood through your veins and helps the circulation. It's very time consuming and exhausting because I had to do at least 4 weeks at a time, five days a week for two hours a day. And I had to go through the process about three times before I saw any results.
I haven't had to use the chamber for about four years now. I am feeling better than ever and can finally use my hands to some extent. Although I have limited use, I still do all the things I used to do. I do range-of-motion exercises three times a week. The hyperbaric chamber does not work for everyone, but it did for me and I'm very thankful
New email address needed 09-26-06 SLE
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Story posted 1-7-2000
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