A Teen Struggles with EDS

teenThis brave teen is managing EDS by staying active and managing the pain.

“A life sentence of  joint pain is not what any 17-year-old high-schooler wants to hear, but Wilmington Friends School junior Peyton Beard simply considers it her burden to bear.

Beard was diagnosed with Ehlers-Danlos syndrome the summer before her freshman year after a wrist hyperextension at field hockey camp befuddled doctors.

Following more injuries that couldn’t be classified as the 6-footer being clumsy, the family went to Alfred I. duPont Hospital for Children, where they were told that Beard had EDS, a tissue disorder that creates laxity in the muscles around the joints. Doctors said there was no cure and that she would have to deal with the joint pain her entire life. The only way to relieve the aches is to build up those muscles so the joints don’t become too loose and give out.

“There will be times where I don’t want to work out at all, but I know that I have to,” Beard said. “If I don’t, then I’ll have days where it’ll be more difficult to walk, whereas when I work out, even for just a half-hour, I don’t have that problem.”

Beard said she also tries to stay active by walking to school, running, playing basketball and – her favorite – riding a bike. Last year, she participated in Bike to the Bay with her family. She said the training for that hooked her on biking to stay fit.

But the bad days do come, when burning pain runs through her body.

“When do I get them, it just kind of feels like, I don’t even know how to describe it,” she said. “It kind of varies. It’ll feel as if I’m hit by a car, or that somebody is just pulling my arms so far apart that they just want to fall off.”

While the flare-ups do not happen as often as they used too, Peyton’s mother, Lea Beard, said it stopped her in her tracks for a moment.

She said the worst thing was hearing that there was nothing anyone could do to help her daughter. Parents want to be able to fix everything wrong with their children, she said, but she was helpless to stop her daughter’s pain.

Peyton Beard was hospitalized last May for extreme musculoskeletal pain. She couldn’t even walk down the hallway or move her joints,  Lea Beard said. During that time, Peyton learned she had hit the peak of pain and it could not get worse.”

Peyton is one of the many who is struggling with EDS.  It helps when you finally have a name for the pain you are managing.

 

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