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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.

Orange Day Lilly for Donna M by Sherrill Knaggs, ISN Artist 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.

To Contact the Author
Donna H.
New email address needed 08-06-09 SLE
Old Email Prefix: jly61
Story posted 5-13-03

ISN ISN Senior Artist: Sherrill Knaggs
ISN Story Editor: Judith Devlin
LINKS
Autoimmune Disease
CREST
digital (finger) ulcers
Raynaud's
rheumatologist
scleroderma
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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