Scleroderma - Describe Your Experience

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What is scleroderma?

Scleroderma is an autoimmune disease of the connective tissue featuring skin thickening, spontaneous scarring, blood vessel disease, and varying degrees of inflammation, associated with an overactive immune system. Autoimmune diseases are illnesses that occur when the body's tissues are attacked by its own immune system. Scleroderma is characterized by the formation of scar tissue (fibrosis) in the skin and, potentially, the organs of the body. This leads to thickness and firmness of involved skin.

Scleroderma is classified as localized or widespread (systemic sclerosis with a tendency to affect internal organs). Systemic sclerosis is further divided into limited and diffuse based upon the extent of skin involvement.

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See what others are saying

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: 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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