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Donna M: CREST Scleroderma

I am not sure where this disease will take me or how long before other things start happening.

It all started with an infection at the end of my index finger in December 1999. My finger became red, inflamed and sore to touch. After a couple of weeks I went to my local doctor and he said there was an infection and there was no way for it to come out. He proceeded to cut a hole through my finger and placed a wick in it to take out the infection. I think I would have rather kept the infection as it was a very painful procedure.

Then he sent me to another doctor who did blood work and sent me home still not knowing what was going on. When the results came back he suggested that I see a rheumatologist, which I did. The rheumatologist said I had an autoimmune disease, or what is known as CREST scleroderma. He also said that I had Raynaud's. That was in February of 2000.

I get ulcers on the tips of my fingers, my skin is tight on my hands and the skin often cracks open under my fingernails. This is quite painful. All this doctor has done is put me on blood pressure medication, to help keep my kidneys from failing, and run certain tests to make sure my lungs and my heart are still working okay.

I get the purple fingers and the pain when it is cold outside, and I am always wearing gloves. I live in the Northeast and we have cold winters and they are tough to get through.

It is very hard to even make a fist as my skin on my hands is tight. I have trouble with my skin being very dry all the time and I think I have tried every lotion on the market.

I am not sure where this disease will take me or how long before other things start happening. I just try to take it day by day. Some are better than others and every morning when I wake up, I know that I still have a chance.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.