Throughout June, our resident blogger and scleroderma patient Nicola Whitehill posted daily information and facts on scleroderma to mark Scleroderma Awareness Month. Read all Nicola’s Scleroderma Awareness Month articles here.
While scleroderma is a rare disease with a certain lack of understanding and currently no cure, the scleroderma community spares no efforts to change the situation by hosting Stepping Out to Cure Scleroderma awareness walks in cities and towns nationwide.
The recent Tri-State Chapter for the Scleroderma Foundation walk, June 5 at Otsiningo Park, in Binghamton, New York, was just as special.
Patients loved ones, caregivers and scleroderma advocates gathered and walked though streets in an effort that allowed participants to support the fight against the disease, and to raise money for scleroderma research and a cure.
“I guess my ultimate desire is that we wouldn’t need to have a walk, that would be the best thing. Until then, it just is nice that you know family and friends support their loved ones,” said Rosemary Markoff, a member of the walk committee who struggles personally with the disease, according to a report from 12 WBNG Action News.
The event has been growing every year and the organization is hoping for a cure as well as more effective diagnosis and treatment for scleroderma.
“I think that unfortunately more people have been diagnosed, it’s very difficult to diagnose it, and now that they’re getting better at the diagnosis, people are becoming much more familiar with the disease,” said Terri-Jo Ramia, who was the walk coordinator for this year and whose daughter battles a form of scleroderma.
Ramia also used the opportunity to raise awareness for the disease and increase understanding about its mechanism of action. “It officially means hard skin, sclero meaning hard; derma meaning skin,” she said. “What it is, it’s an overproduction of collagen, which under good circumstances it will repair the skin, but for people with the disease it actually produces more and it can inhibit the cell growth.”
Markoff further explained: “Too much of anything is bad, the collagen creates scar tissue, which it has done in my hands and for other people it can do the same thing in your lungs, or your kidneys, or your heart, and that’s where it becomes life threatening.”
The community event – complete with raffles, free food, and a DJ – also focused on highlighting the work of the Scleroderma Foundation. The proceeds will go to the foundation’s programs that include support groups, educational forums, and more to help scleroderma patients and their families cope with the disease.
The Stepping Out to Cure Scleroderma walk is organized in different locations throughout the country by several chapters of the Scleroderma Foundation. Know more about the other events organized here.
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