Scleroderma, in its severe form, is a life-threatening disease that affects multiple organs in the body and causes them to shut down. It is a chronic and degenerative disorder with no known cause or way to stop its progression. The National Institutes of Health estimates more than 300,000 people in the U.S. alone are living with some form of the disease. This is as large a population as patients with muscular dystrophy, multiple sclerosis, cystic fibrosis.

Scleroderma primarily affects women between the ages of 30 and 50, but also strikes men and children across all ages and ethnic boundaries. Scleroderma is a combination of autoimmune, inflammatory, and vascular disease. In severe scleroderma, multiple organ systems can be involved, including the heart, lungs, blood vessels, and kidneys – often with lethal consequences. There is dramatic tissue damage including the hardening of skin, shrinking of muscles, and injuring of tendons. Patients frequently lose mobility in their joints, especially the hands, and facial changes can be disfiguring and often painful.

The Scleroderma Research Foundation (SRF) is working with some of the world’s most distinguished scientists and medical institutions to fund research aimed at helping patients to live longer, fuller lives today – and curing patients tomorrow.

Any of the following warning signs is a signal to see a rheumatologist or other knowledgeable physician for diagnosis and appropriate treatment:

• Skin thickness
• Stiffness of hands and feet
• Unexplained swelling/puffiness
• Swallowing difficulties
• General fatigue
• Raynaud’s phenomenon*

*blanching of feet and hands from white to red to blue in response to cold or stress

For additional symptoms or to learn more about scleroderma, click here.

Information is also available for health professionals, medical researchers, and the media.