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
Old Email Prefix: sassjeffshelly
Story posted 1-7-2000
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: