Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: 19-24 Male (Caregiver) Published: May 09

My husband has scleroderma and it has ripped our life apart. We have 3 children, a 1 year, a 4 year and a 9 year old; he can no longer play with them or even hold his daughter. He was diagnosed 3 months ago but it started about last year and has quickly progressed. It started with his hands and feet in pain and changing color from white to purple. He has now lost all function of his right hand it is stuck in a curl position and his left hand is following quickly it is also in his legs. There are most days he can't walk. He is in pain all the time and lays in bed because that is all he can do. I feel sorry for anyone who gets this, I wouldn"t wish it on my worst enemy.

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Comment from: lee, 45-54 Female (Patient) Published: March 13

I was told I had scleroderma in 2004, I was bed ridden for nearly 3 years. Two years ago I went on a course of chemotherapy, which has help me a great deal. I can move around and do things again. I have a bit of my life back, even though I will never work again at least I can do things. I keep getting bad reflux which ends up in my lungs so I am ending up with pneumonia; this has started about 4 weeks back. I am not sure what the next course of action is, I try anything that has worked for others and I have been on many medications, most didn't work.

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Comment from: kelticlady, 45-54 Female (Patient) Published: November 29

I am 49 years old right now. I was diagnosed with scleroderma in 1992. Two years later, I was in the hospital with congestive heart failure. I really have not progressed much since then. I do have trouble with my hands and arms. They do not straighten out very well. I take a series of medicines: Cuprimine, Captopril, and Diltiazem. I do suffer emotionally and from depression. That has been the worst for me. I do feel lucky to be here today, and I try to be thankful for the time I have been given. I always get my rest.

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Comment from: slick1, 55-64 Female (Patient) Published: November 18

In 1999, I was diagnosed with eosinophilia fasciitis. My doctor had me taking Remicade, which worked very well until I started having liver problems. I had a biopsy performed on the muscle, which showed that I had systemic scleroderma. I am now taking Cellcept. I have been taking it for only four weeks, but already my skin is looking better, and I am being told by friends and family that I sound and look as if I feel better. The Cellcept makes me very tired, but we will know more after it completely gets into my system.

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Comment from: 45-54 Female (Patient) Published: August 04

I too was diagnosed with systemic scleroderma. It started with Raynaud's, since then have developed gastro intestinal problems due to the muscles in my esophagus not working anymore. I am undergoing testing for lung hypertension. I also have thyroid problems that have been taking med. for about 25 years. I also have been diagnosed with fibromyalgia. New research is suggesting that hormones play a big part in disease progression. I read where relaxin hormone slows the disease process. This is a hormone found in pregnant women and relaxes the muscles in turn keeps fibrosis at bay. I haven't been given anything that works yet. I can't take much medication due to lung involvement. I have found that sunshine and as much activity as I can muster keeps acute symptoms down. Good Luck and God Bless to all that suffer this crazy disease. I am 54 yrs old.

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Comment from: dawn, 13-18 Female (Patient) Published: August 01

I'm 18 years old female, with scleroderma (local) at the left face. I was diagnosed way back 2006. Having this is so really difficult in my life. I feel so insecure to others, my self esteem is so low. I have no confidence in my self. It leads me to became a shy person. I wonder why I have this because when I was in toddler stage I didn't even have this. I pray that someday Scleroderma can be cured.

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Scleroderma - Symptoms and Signs Question: What are your scleroderma symptoms and signs?
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you have?

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