Sclero-what? June is Scleroderma Awareness Month
By Christina Relacion, Guest Contributor, Scleroderma Foundation
A rare disease affects as many as 1 in 10 Americans, according to the National Organization for Rare Disorders. But chances are you’ve never heard of scleroderma or even met someone with the disease.
Scleroderma is a chronic disease, where a person’s immune system attacks the body.
One of the most noticeable physical features of the disease is a thickening and tightening of the skin. When translated from its Greek and Latin roots, the word “scleroderma” literally means “hard skin.” In some cases, a person may experience a hardening of internal organs, like the lungs, heart, kidneys, esophagus or gastrointestinal tract. This can lead to scarring, or sclerosis, of the organ systems, which in turn, causes the organs to work less effectively, and potentially could lead to organ failure or death.
Unfortunately, the cause of the disease is unknown. There is no cure, but some medications and treatments help alleviate some symptoms.
Step Out With Us, Share Your Stories
For more than two decades, the Scleroderma Foundation, its chapters and support groups have recognized June as Scleroderma Awareness Month. We mark this time with annual awareness and fundraising events, such as our “Stepping Out to Cure Scleroderma” walk-a-thons.
Now, 2012 marks the first time that the Scleroderma Foundation has created a website specifically to help with scleroderma awareness at http://www.sclerodermaawareness.org/.
On the website, visitors are encouraged to share their personal stories of how the disease affects his/her lives.
Through the website, you also can:
- Find 30 ways to help increase awareness of scleroderma
- Download special artwork for your Facebook timeline or other social networking sites.
- Print out a sample letter to the editor to fill in your information and send to your local newspaper.
Each year, the Scleroderma Foundation also joins the Federation of European Scleroderma Associations (FESCA), and other international scleroderma organizations to recognize June 29 as World Scleroderma Awareness Day. On this day, you’re urged to wear the color teal as you help teach others about this devastating disease.
To learn more about scleroderma, please visit http://www.scleroderma.org/
Christina Relacion is the communications manager at the Scleroderma Foundation’s national office. The foundation works to support people living with the disease, along with their family members and friends. It has 23 chapters and more than 150 support groups across the country. Learn more at www.sclerodermaawareness.org