North Carolinians are taking bold steps to help treat rare diseases

Doran Reynolds and Bob Buckley

2 days ago

(WGHP) — Being exceptional is great, as long as it’s not a disease.

February 28th was National Rare Diseases Day in the United States. As the population grows, so does the number of people with rare diseases.

“Everyone has something. This is ours,” said Annie Kendrick. “My husband has allergies and we have EB.”

The “EB” she refers to is epidermolysis bullosa, a condition thousands of Americans are born with. It appears on very fragile skin.

It defined Annie Kendrick’s youth growing up in West Virginia in the 1980s and ’90s.

“I knew there was a limit to what I couldn’t do. I had to avoid a lot of birthday parties like ice skating tearing my ankles…I got a ring of blisters,” said Annie. “You can’t put a Band-Aid on it. A Band-Aid will tear your skin right away.”

Forty years later, there are still very few things the medical community has come up with.

“As far as therapy goes, nothing,” said Annie. “It’s mostly trial and error.”

I’m starting to see hope. Pearl Jam lead and his singer Eddie Vedder launched an organization called EB Research Partnerships. I have many friends who are doing what they can.

It all started six years ago when a group in Massachusetts ran a fundraiser by jumping into the water to donate to the cause. They call it Plunge for Elodie. Named after a girl who suffers from EB.

Donations not only help with research, but also help families cope with their day-to-day lives.

“The main thing is the cost of wound care…the cost of wound care is astronomical,” said Annie.

“The support from this community has been huge, it really is,” Annie’s mother Brenda Key said of the people of North Carolina. North Carolina is in her second year since participating in fundraising at our own plunge at her aquatics center in Greensboro. “There are some people in London trying to jump there. There are people in Australia trying to jump.”

This year’s Elodie’s Greensboro Plunge is Saturday, March 25th. Look for her North Carolina Plunge at the top of the homepage.

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