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Mary Lou

Hi. My name is Mary Lou. I was diagnosed with diffuse scleroderma on 12/9/96. My symptoms started 3 months earlier in September with fatigue, anemia, and swollen hands, feet and lower legs. I was scared to death and I was afraid to go to a support group meeting for fear of what I might see. However, attending that first meeting was the best thing I did. I met the most wonderful, supportive, and informative friends. They have helped me deal with scleroderma. I sought counseling for myself to be sure I was on the right track and to guide me in helping my family cope. I did not continue with counseling and I did not have my family attend. That was a big mistake. I wish I had insisted that my husband and kids go to counseling, because it would have given them someone not connected with the family to talk to. Professional counselors are experienced in dealing with the stress this disease can cause to the entire family. Scleroderma affects the entire family, not just the person.
My scleroderma primarily involves the skin. At one point, the skin on my entire body was as hard as a table top. It is now softer over most of my body. I tried d-penicillimine but felt I was getting worse, and stopped. I have mainly taken minocin (minocycline), except when participating in the relaxin drug trial and am now in a skin trial through Stanford. My skin score dropped 15 points on relaxin, and it has remained soft, I truly believe that the minocin helped. It took about 10 months before I noticed any skin softening. It was a very gradual process, but my skin got softer. Check out the website for The Road Back Foundation for more information on the antibiotic therapy.
My advice is to keep a positive attitude and don't ever give up hope.

 

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Researchers at Princeton University used DNA microarrays to characterize gene expression patterns in skin biopsies from individuals with a diagnosis of systemic sclerosis with diffuse scleroderma.