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Michelle D: Limited Scleroderma and CREST

It is possible to have a life with scleroderma.

I was sixteen and wanted to lose weight. I do not know if it was a reason for me getting the disease, but the doctor said it did not help. I just about quit eating to lose weight. I was rather heavy. I went from 200 pounds down to 114 pounds in just a little over six weeks. I thought I looked good, but my family felt differently.

I began to get very tired. I thought the lack of nutrition was the culprit. I also began to lose flexibility. I thought sitting on the couch was the reason. My family kept pleading with me to go to the doctor. Finally, about a year or so later, I went. I had a itchy line of dry skin across my belly. I was told it was just a form of fungus. I was told I needed to exercise more and that I just needed to eat better.

I was finally diagnosed a few months later. I could not hold down a job. I stayed dizzy and tired and sick. I was just too run down to make it through a day. Finally I was sent to a doctor who knew what I had and confirmed it with a blood test! You have to specifically be tested for scleroderma.

I was told of all the things that happen to people with scleroderma and I gave up. I waited to die. This was the hand dealt to me. One day I decided to get up and get moving. I started giving myself a bath and dressing myself again. I have been in remission for about eleven years now. My scleroderma is just external. My hands and my face are mildly affected. I did start eating again. I do work now.

The CREST part is little tiny red dots that appear on my hands and I have red blotches on my face and my nose is red. I have Raynaud's. My hands turn blue to purple and I am sensitive to cold. I also have the calcium deposits on my hands and arthritis, too.

I am doing fine now. I have learned to live with the few symptoms I have and remember that there are others worse than me. It is possible to have a life with scleroderma. However long we have, just make the best of it.

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ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

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