What Is Scleroderma?

Skin is the largest organ in our bodies. It is a miraculous living shield that holds us together, within and without. Skin shelters our internal organs, moderates our temperature, sheds water, protects us from infection and mends itself.

Scleroderma is an auto-immune disease that causes skin to become abnormally thick and stiff. For reasons that are still unknown, the body attacks itself by creating too much collagen, our skin’s main protein building block that strengthens tissues and organs. It’s as if the body’s natural scarring process goes haywire.

Derived from the Greek for “hard” (sclero) and “skin” (derma), scleroderma manifests uniquely in each individual—from mild thickening of skin in the hands and face to disabling disfigurement and life-threatening internal organ damage. The disease may progress gradually, over a period of decades, or rapidly, over a period of weeks.

Scleroderma often develops in tandem with severe Raynaud’s phenomenon—decreased circulation, cold, numbness and ulcers in hands and feet—and Sjögren’s syndrome—another auto-immune disease that causes white blood cells to attack the body’s moisture-producing glands, reducing tears, mucous and saliva.

At its mildest, scleroderma causes difficulty with tasks involving manual dexterity. At its most severe, scleroderma creates a feeling of being trapped in your own skin. It distorts your face, contorts your body, damages your internal organs and bends your fingers into claws. It is exhausting, painful and bewildering.

Scleroderma is not contagious, and it is not believed to be genetically transmitted, though researchers suspect there is a genetic predisposition, activated by some form of environmental trigger. An estimated 300,000 Americans have some form of the disease. Most patients are diagnosed in middle age, and women outnumber men by a four-to-one margin.

New treatment protocols are being discovered, and many medications are now available to ease symptoms. While much research is underway, however, there is, as yet, no known cure.

The best defenses against scleroderma are early detection, expert medical care and careful attention to diet, exercise and lifestyle choices. Excellent, comprehensive information about scleroderma, medical resources, current research and disease management can be found at both the Scleroderma Foundation and the Scleroderma Research Foundation.