June is Scleroderma Awareness Month
For more than 20 years, the Scleroderma Foundation, its chapters and support groups have recognized June as Scleroderma Awareness Month, marking it with annual awareness and fundraising events, as well as obtaining presidential, state and local proclamations. The foundation has joined the Federation of European Scleroderma Associations (FESCA), and other international organizations in recognizing June 29 as World Scleroderma Awareness Day.
What is Scleroderma?
Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body. Once thought of as a rare condition, it is diagnosed in more people today than muscular dystrophy, multiple sclerosis, or cystic fibrosis.
It literally means “hard skin.” It 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. As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively, and can lead to organ failure and death. Scleroderma is not contagious, infectious, cancerous or malignant.
How is it diagnosed?
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.
Who develops it, and when?
It’s estimated that about 300,000 Americans have scleroderma. About one third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult. There may be many misdiagnosed or undiagnosed cases.
Localized scleroderma is more common in children, whereas systemic is more common in adults. Overall, female patients outnumber male patients about 4-to-1. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases. However, it can develop in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55.
What is the treatment?
Currently, there is no cure, but there are many treatments available to help particular symptoms. For instance, heartburn can be controlled by medications called proton pump inhibitors PPIs) or medicine to improve the motion of the bowel. Some treatments are directed at decreasing the activity of the immune system. Some people with mild disease may not need medication at all and occasionally people can go off treatment when their condition is no longer active. Because there is so much variation from one person to another, there is great variation in the treatments prescribed.
How You Can Help
The Scleroderma Foundation has been fighting to spread awareness and help educate the public about this devastating disease for 15 years. Please join the fight and stand alongside them for June’s Awareness Month. Help them put an end to “sclero-what?” Here are just some ways you can help:
- Become a Scleroderma Foundation member.
- Write a ‘letter to the editor’ to your local newspaper to TV station.
- Find a “Stepping Out to Cure Scleroderma” walk-a-thon in your area.
- Email your lawmakers to urge him/her to support the “Scleroderma Research and Awareness Act.”
- Make a gift in honor of someone special to the Scleroderma Foundation.
- Tweet about Scleroderma Awareness Month. Use the hashtag #scleroaware14.
- Send Scleroderma Foundation info to your doctor’s office so other patients may benefit.
For more information on how you help, visit the Scleroderma Foundation Awareness Month website.
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. The national office is headquartered in Danvers, Mass. For more information about the Scleroderma Foundation please visit their website.
Source: Scleroderma Foundation