Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Published: June 25

I am a 55 yr old white female, my father had scleroderma and his hands, arms feet and legs were greatly affected, he died at age 42 with what they said was lung cancer but he had breathing problems a lot all the time I could remember. I was just diagnosed with scleroderma a month or so ago, was diagnosed with RA and lupus some 5 yrs ago and I have for the last year and half been being treated with mexrethrotate shots weekly. I also have many lung and breathing problems I have pneumonia every year and sometimes more than once. I suffer from loss of bowel problems and digestive problems. My blood pressure has recently been going up and down a lot. The only reason they now say that I have scleroderma is because my skin on my arm and legs has become so hard they can't put an IV in it takes about 6 to 7 tries to get one in me and they can't hardly stick me to draw blood. I am already looking at possibly needing oxygen sometime in the very near future. Everyone has always said how young I look for my age but it seems now it is starting to catch up at a fast rate, and my skin is looking older to quickly. I am very scared of what the future holds and how much time I have left at a fair quality of life. I try to always stay positive, because I love life and people. I would like all the info on this I could get, since there wasn't any when my father had it and dies in 1963, I just remember how pitiful he looked and how bad he hurt, and how cripple he became.

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Published: May 28

A 24-year-old male friend of mine has scleroderma. He was diagnosed in high school when skin patches first appeared under his arms. There was no further development of the disease until a few months ago (he is now 24 years old), when the skin patches began to grow bigger. They have not spread to any other limbs. He is also tired all the time, works full time but is in bed most nights by 8 p.m. He also has a poor recovery time after climbing stairs while talking. Apart from this information, and some of it just from observation, he is very closed and will not talk about what's happening to him. The progression of his scleroderma is not typical of anything I have read on the Internet. His doctor diagnosed him with systemic scleroderma. He doesn't suffer from Raynaud's. It's so confusing.

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Comment from: Cracker, 55-64 Female (Patient) Published: September 30

I was diagnosed with systemic sclerosis in 1988. Gastrointestinal symptoms have dominated my course with this disorder. In the last month, I have developed a sore tongue. Eating makes it worse, and it gets worse as the day goes on.

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