North Carolinians taking plunge to help with treatment of rare disease

“I knew there were limitations to the things I couldn’t do. I had to avoid a lot of the birthday parties like ice skating that would tear my ankles up…I would have rings of blisters,” Annie, who was born with EB,  said. “I can’t wear Band-Aids. Band-Aids will tear the skin right off.” Forty years later, there is still not much the medical world has come up with. “As far as treatments, there are none,” Annie said. “it’s mainly just trial and error.” Hope is beginning to emerge. Pearl Jam lead singer Eddie Vedder started an organization called with others EB Research Partnership. There are also many friends doing what they can. It started six years ago with a group in Massachusetts doing a fundraiser where they jump into the water and donate to the cause. They call it Plunge for Elodie. It’s named for a little girl who suffers from EB.

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