(WGHP) — Being exceptional can be nice unless it’s a disease.
Feb. 28 was National Rare Diseases Day in the US and, as our population grows, so does the number of people with diseases that are rare.
“Everybody has something. This is ours,” Annie Kendrick said. “My husband has allergies, and we have EB.”
The “EB” she refers to is epidermolysis bullosa, which is a disease just several thousand Americans are born with. It manifests itself in very fragile skin.
That defined Annie Kendrick’s youth as she grew up in West Virginia in the 1980s and ’90s.
“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 said. “I can’t wear Band-Aids. Band-Aids will tear the skin right off.”
Forty years on, 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.
Donations can go a long way not just with research but in helping families cope day-to-day.
“The main thing is wound care costs…the cost of wound care is astronomical,” Annie said. It can be as much as $80,000 a year.
“The support from this community has been tremendous, it really has,” said Annie’s mom, Brenda Key about people in North Carolina which is now in the second year of being part of the fundraising with our own plunge at the Greensboro Aquatics Center. “There are several people in London that are going to jump there. There’s somebody in Australia that’s going to jump.”
This year’s Greensboro Plunge for Elodie is Saturday, March 25. Just look for the North Carolina Plunge at the top of the home page.