DANVERS, Mass., May 29, 2014 /PRNewswire-USNewswire/ -- Too many people in the United States know nothing about scleroderma, a mysterious and frequently disabling condition, which affects an estimated 300,000 people, so this June the Scleroderma Foundation wants to increase awareness of the disease that can strip away a person's independence and quality of life. Scleroderma strikes women 4-to-1 over men, with the onset of the disease typically between the ages of 25 and 55 years old. June is designated "Scleroderma Awareness Month" and will highlight individuals who fight the disease on a daily basis.
During Scleroderma Awareness Month, we want people affected by the disease to share a "selfie" online and help put an end to the commonly heard phrase, "Sclero-What?" The photos will be used in an upcoming poster series, which will further educate and engage people about the disease. "The people in the scleroderma community are some of the strongest, bravest and most beautiful. That's why we're heading straight to patients, caregivers, family members and friends, to put a face on scleroderma for others who currently are unfamiliar with it," said the Foundation's CEO Robert J. Riggs. "With the extreme popularity of photo sharing on social media sites, especially thanks to apps such as Instagram, we want to share the courageous beauty of the scleroderma community with people all over the world, in an effort to educate them about the truly difficult and life-altering circumstances that this disease can cause."
Skin tightening and thickening is one of scleroderma's most visible features. Yet, there is much more happening beneath the skin's surface when battling this disease. Scleroderma causes a person's autoimmune system to attack the body's tissues. A patient may have internal organ involvement, causing the tissues of vital organs, such as the lungs, gastrointestinal tract or heart, to become compromised. This can lead to extreme difficulty with essential functions, such as breathing or eating. Due to the disease's obscurity among the general population, and even among those within the medical community, obtaining an accurate diagnosis can be a long and difficult process. On average, this can take between 5 to 7 years with trips to multiple doctors and specialists.
Because of these obstacles, events like Scleroderma Awareness Month are crucial to the well-being of patients all over the world. Education for people who may be affected by the disease and those who are newly diagnosed is paramount so that they can access the support, resources and treatment they need as soon as possible. The Scleroderma Foundation's chapters and support groups host education, support and awareness events throughout the year.
Besides sharing "Scleroderma Selfies," the Foundation has created a microsite (www.sclerodermaawareness.org) featuring a variety of opportunities for supporters to help educate and spread awareness. Additionally, more than 50 "Stepping Out to Cure Scleroderma" walk-a-thons are scheduled in cities around the country throughout the rest of 2014. These family-friendly events are an excellent opportunity for communities to come together and show their support for individuals fighting scleroderma.
For more information about scleroderma and Scleroderma Awareness Month, please visit www.sclerodermaawareness.org! Remember, World Scleroderma Day is Sunday, June 29!
Scleroderma is a chronic, often progressive, autoimmune disease, which means that the immune system attacks one's own body. Scleroderma 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. Some medications and treatments can help with certain symptoms, but there is no cure for scleroderma. The disease affects an estimated 300,000 people in the United States.
About 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 Scleroderma Foundation has joined the Scleroderma Society of Canada, the Federation of European Scleroderma Associations (FESCA), and other international scleroderma organizations in recognizing June 29 as World Scleroderma Awareness Day.
About the Scleroderma Foundation
The Scleroderma Foundation is the national organization serving the scleroderma community, including those living with scleroderma, their families and friends, and healthcare professionals working in the field of scleroderma research and treatment. The Foundation was formed Jan. 1, 1998, and is headquartered in Danvers, Mass. It is a 501(c)(3) nonprofit organization with a network of 23 chapters and 150 support groups throughout the United States and Puerto Rico. The Scleroderma Foundation is the largest nonprofit funder of peer-reviewed medical research, making available at least $1 million per year in new research grants to find the cause, better treatments, and a cure for scleroderma.
For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673). You also can find the Foundation on Facebook (www.facebook.com/sclerodermaus) and Twitter (@scleroderma).
SOURCE Scleroderma Foundation