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Locals Help To Find a Cure For Scleroderma

Hundreds of locals are Stepping Out to Cure Scleroderma at Otsiningo Park.

Scleroderma is a skin disease that hardens the skin and can affect anyone.

Fox 40's Molly Darrow tells us the story of one young girl affected by the disease and how the community is walking for a cure.

At first glance, Elie Ramia appears like any other child, running around and playing with friends. She found out she had Scleroderma at just four years old. And at Sunday's walk one team of more than 60 sported "Team Elie" shirts to show her their support.

"Really, I feel happy and special," said Elie Ramia.

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, Scleroderma is an autoimmune disease that causes abnormal growth of connective tissue, which supports the skin and internal organs. This produces hard, tight skin but the problem can go deeper, in some cases, it can be fatal.

"Scleroderma is a disease that most people have never heard of, let alone try to pronounce it. Its symptoms mask MS, lupus, so you have to go through many tests to be diagnosed and finally they might come down to Scleroderma," said Co-Organizer of Scleroderma Walk Carol Porcino.

Scleroderma may harden the skin, but for seven-year-old Elie it has not hardened her personality.

"In the beginning it was very difficult because you just don't know what to expect, you don't know what's coming. You want to make sure that your child is okay, but now that we've learned and we really feel that we have a handle on what we're doing it's like any disease that you just have to have faith and you have to believe that everything's just going to work out and everything happens for a reason," said Elie's mom and Chairperson of the Binghamton Stepping Out to Cure Scleroderma Walk Terri-Jo Ramia.

And although there is currently no cure, Elie says shes hopeful for the future.

"It is really important to me so that all the people with Scleroderma can get better," said Elie.

Sunday's event raised more than $30,000 dollars which will go towards the Scleroderma Foundation.