In conjunction with the initiative, which is dubbed More Than Scleroderma: The Inside Story, they created a website that will feature the latest scientific knowledge and news on scleroderma and offer useful resources to patients and their families. The site’s content includes an overview of the disease, including how it can be diagnosed and treated.
A key goal of the initiative is to correct misperceptions that people have about scleroderma. One way it will do this is to have those living with the disease tell their stories. The website includes photographs and videos of 10 Americans sharing their experiences.
“Many people don’t realize that scleroderma is much more than a skin disease, and these inspiring stories may help to dispel that misperception and educate others about the totality of scleroderma’s life-changing impact,” Robert Riggs, CEO of the Scleroderma Foundation, said in a press release.
“The greater the awareness, the more likely it is that those affected by scleroderma will gain access to the support and care that are so critical in living with this disease,” he added.
One of the stories is about Paige and Caitlyn St. Pierre, a mother and daughter from Larose, Louisiana.
Since Paige was diagnosed in 2010, she has fought to prevent her fear of the disease from taking control of her life and those around her. The wife and mother of three joined online support groups so she could connect with others facing the same challenges.
Eventually she found a specialist who could help her manage her disease.
A year later, Caitlyn, her youngest daughter, began displaying signs of scleroderma. She was diagnosed at just 14 years old.
The two try to stay positive and determined as they battle scleroderma.
“We both have this disease, but there is no way that we’ll ever allow scleroderma to stop us from doing the things we love,” Paige said. “We didn’t want to allow this condition to take charge of us. We wanted to take charge of it — so we decided not to be victims, but victors.”
The Scleroderma Foundation is asking those interested in the disease to help raise awareness by sharing patients’ stories on social media.
More information on the initiative can be found on the website www.morethanscleroderma.com/us/.
Scleroderma is a rare disease, so people will be recognizing it when they observe international Rare Disease Day on Feb. 28. The United States defines a rare disease as one that affects fewer than 200,000 Americans. In Europe it is defined as affecting fewer than one in 2,000 people.
Rare Disease Day will be marked with hundreds of events worldwide. The overarching goal is to increase awareness of the diseases. More information can be found on this link.
The theme of this year’s Rare Disease Day is Research. That’s because research offers hope to the millions of people living with a rare disease worldwide.
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