Ian's Story: Living with EDS

Published: Jul. 26, 2016 at 9:44 PM CDT
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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.

"His ligaments are like rubber bands," Maggie said. "We can move and they stretch and they come back to normal size. Well, his are stretched and won't go back, and so if he pops out a shoulder or half pops out a shoulder it doesn't hurt him."

His daily routine often starts with putting on his braces to keep his ankles in place. Then he heads to therapy at Madonna's Alexis Verzal Children's Rehabilitation Hospital, where he works to gain muscle along with learning motor and life skills.

"He needs to become a body builder at the age of four," Maggie said. "He needs that muscle so he can hold his joints in place because his ligaments are so stretched out, his ligaments aren't doing it for it."

It took 18 months of tests to figure out Ian has EDS.

"We were excited that we knew how to help him, but we both had to grieve. Not a loss of a child, because we still have him and he's still here with us, but grieve some of the hopes and dreams we had for our child and know that they're going to have to change," Maggie said.

After Ian was diagnosed, Maggie found not many doctors know about the syndrome, which is why she's turned to a support group to help her navigate treatment and care.

"It's not like a playbook, nobody tells us how to do this," EDS Patient Kimberly McComb-Meisinger said.

In July, Maggie drove to Ralston to meet with her once-a-month group.

"This is going to really cliche, but like I'm not alone in this and that's a really important feeling," EDS Patient Wendy Hamilton said.

The people there have different symptoms and types of EDS, but similar struggles.

"If I had diabetes or heart disease, I can say that and people know what that is," McComb-Meisinger said. "When you say EDS, people don't know what that is and so they just don't understand the nuances of dealing with it and the challenges that we generally face every single day, with no cure. We're going to have this for forever."

"It's not who I am, it's just a small part of who I am," EDS Patient Linda Neumann-Potash said. "I will for the rest of my life probably advocate for Ehler-Danlos, but my focus is really on how to live a quality life with it."

As Ian grows older, Maggie knows there will be more challenges ahead, including whether or not he'll be able to play sports, if he'll have to use a wheelchair or just helping him understand what makes him different from other kids.

"He's not gonna have a normal childhood, we're gonna have to work things out and we'll give him as normal as possible," Maggie said. "We hope people don't just look at him from the outside and say he looks normal."

In July, new research was released at a conference in Baltimore, identifying more rare types of EDS.

Some people are diagnosed early on, but others go half their life without knowing they have EDS. Symptoms can be mild or serious depending on the person.

After Ian was diagnosed, Maggie found out she also has EDS. While she shows few symptoms, it's a very genetic disorder.

One of Maggie's hopes is that more people will learn about EDS, so care and diagnosis can improve.

For more information on EDS, click the link attached.