Ian’s Story: Living with EDS

Published in 10 11, 7/26/2016


LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed.

For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise awareness and show others with similar battles they’re not alone.

Ian Bittinger is a typical, high-energy four-year-old, ready to take the training wheels off his bike and speed through the neighborhood. Unlike most kids, though, Ian faces challenges many kids don’t have to.

“Some mornings he’s too sore to get out of bed,” Ian’s Mother Maggie Bittinger said. “So, I have to go in and I have to carry him out to the living room and get him ready.”

At three, doctors diagnosed him with a connective tissue disorder called Ehlers-Danlos Syndrome, or EDS. It’s genetic and there’s no cure.

“There’s always gonna be those bad days,” Maggie said.

There are different types of EDS, which can effect the skin, joints and blood vessels. Ian’s type is hypermobile.

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