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Robin T: CREST Syndrome

Hello, my name is Robin, and I was diagnosed with CREST Syndrome about twenty four years ago. The first symptom I was aware of was a sore on my left index finger. It just would not heal. So I went to the doctor and he ran some test and did a test on a spot on my back. The test came back that I had CREST Syndrome.

Mostly I started with Raynaud's Phenomenon. My hands were always cold and turning white, purple then red then back to normal, and hurting. Then I developed a sore on my finger tip that wouldn't go away. And my doctor sent me to another doctor to look at it and he said he would have to dig the ulcer out of the tip of my finger. Well the all heck broke loose. The stupid doctor didn't know what he was doing. My finger died and got frost bite in June.

That night after the doctor did the surgery I was in so much pain that I was taking aspirins every hour. I even called the doctor at around 1:00 AMand told him that my finger didn't look so good and he told me that he didn't have office hours until one o'clock in the afternoon.

So in the morning after I put two of my children on the bus for school and I went to my family doctor on emergency call. He saw my finger and said he couldn't do anything for me, so he was sending me to a vascular surgeon.

I saw that doctor at 10:00 AM and was in the hospital by 10:30 AM. I lost my left index finger to frost bite. After that I never went back to that doctor who did the surgery.

I learned to take care of my hands myself. I found a rheumatologist who was fantastic, and I loved him to no end. He explained everything to me about the CREST and everything I had to deal with.

Then I moved to Tennessee, where I got divorced, and lived with my children and happily with nine fingers. I found another rheumatologist and he couldn't believe that I had CREST for so many years and I was doing so well.

My hands hurt a lot now. I have a lot of calcium built up on my fingers, but the doctors cannot operate any more. I have had four operations in the past six years and they just can't do anything else for my fingers. So I have bumps on both hands.

Well, I have to stop typing right now. My hands hurting too much. I'll try to get back later to finish.

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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!

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