June Is National Scleroderma Awareness Month

Scleroderma Awareness Month

June is National Scleroderma Awareness Month, and to commemorate the occasion 27 walks will be held in 16 states.

The Stepping Out to Cure Scleroderma walks all share a common purpose: to raise awareness and funds for scleroderma.

"These events galvanize our patient communities while raising the public profile of a little known but often debilitating disease," said Frances Waldron, chief executive officer of the Scleroderma Foundation. "Though these walks raise money through pledged donations, the primary purpose of the walks is to educate the public on the effects of scleroderma."

State chapters and support groups affiliated with the Scleroderma Foundation will also work to raise awareness through media campaigns, government proclamations, educational programs and special events.

Scleroderma is a chronic, often progressive, autoimmune disease in which the body's immune system attacks its own body.

The disease, which literally means "hard skin," can cause a thickening and tightening of the skin. In some cases it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract.

Some medicines and treatments can help with certain symptoms, but there is still no cure for scleroderma, which affects about 300,000 nationwide. About 75 percent of people living with scleroderma are women, with the majority of those between 25-55 years old. (By way of comparison, about 50,000 people have muscular dystrophy, 250,000 are estimated to have lupus and 350,000 have multiple sclerosis.)