Posted on 08/08/2006 12:29:34 AM PDT by neverdem
Before Steve Nickerson, a photographer at The Rocky Mountain News in Denver, began his treatments for systemic scleroderma, the illness had already sabotaged his body on multiple fronts.
His skin and fingers were so severely stiffened — “tough as rhino hide,” he recalled one doctor saying — that he could not tie his shoes and could barely hold his Nikon. His lungs became scarred. He became so weak that he could not climb a single step without gasping for breath.
Even eating became arduous: his mouth would not open sufficiently for a normal bite.
“I can tear an apple apart, sort of animal-like,” said Mr. Nickerson, who measures the progress of his treatments according to increased jaw opening. “I have gone from 23 millimeters to 27,” he said.
Scleroderma means “hard skin,” a hallmark of the illness that can turn hands purple as if from frostbite and can curl fingers into woodlike nonfunctioning. Rare and enigmatic, it is a chronic, often progressive rheumatic disease in which the immune system overproduces collagen, which can stiffen and thicken the skin, typically on the hands, arms, legs and face.
The symptoms and their severity can vary greatly among patients, and the illness takes two main forms. Systemic scleroderma — which can ravage not only the skin but internal organs like the heart, lungs and kidneys — can be life-threatening. Localized scleroderma can be limited to patches of thickened or discolored skin, while internal organs are spared. This form does not lead to systemic scleroderma and is not fatal.
There is no cure for scleroderma. But doctors are using a growing number of treatments for people like Mr. Nickerson, who have the more serious systemic form, also called systemic sclerosis. As recently as June, The New England Journal of Medicine reported on a new...
(Excerpt) Read more at nytimes.com ...
SC ping
There is a therapy for scleradoma as well as rheumatic arthritis that has had some success at http://www.rheumatic.org that is a lot less toxic to the body than chemo.
They call it a rare disease. I know three people who have (had -one died from it) it in my circle of acquaintances. Not too rare.
My Mother has it, her hands are disfigured. She also has a small spot on her lung that they are watching closely. So far, that spot hasn't spread any further in the last year.
I just got over a three week case of poison ivy, and I regret complaining incessantly about that, after reading this article.
This is a very bad and fatal disease and usually strikes women.
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FReepmail me if you want on or off my health and science ping list.
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