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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Resources

Scleroderma Foundation

Scleroderma Research Foundation

These two non-profit organizations each fundraise and distribute more than $1 million annually in support of medical research to find the cause and cure for scleroderma. Both sites provide comprehensive information about scleroderma, current treatments, coping with the disease, medical resources and contact information, and support group networks.

Johns Hopkins University Scleroderma Center
Clear, accessible explanations about scleroderma, its basic variations and medical treatment. Provides a good introduction and overview.

PubMed Health: U.S. National Library of Medicine
A basic outline of major scleroderma symptoms, tests and treatments.

Sjögren’s Syndrome Foundation
A detailed resource about this auto-immune disease, which can develop in tandem with scleroderma, that attacks moisture-producing glands in the eyes, nose and mouth.

Mayo Clinic: Raynaud’s Disease
All about Raynaud’s, which typically accompanies scleroderma. This medical condition causes extremities, such as fingers, toes, the tip of the nose and ears, to feel cold and numb. These web pages cover the basics, as well as treatment and lifestyle remedies.

Pulmonary Hypertension Association
Late stage complications of scleroderma can include pulmonary hypertension, high blood pressure in the lung’s arteries that can cause heart failure. The PHA site covers symptoms, treatments, medical resources and help for caregivers.

 

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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