Rare Disorder Causes Limbs To Come Apart

Woman Has To Wear Braces To Keep Joints From Dislocating

CLEVELAND -- Chances are you've never even heard of a disorder that causes the glue that holds your body together to just fall apart.

It's chronic, painful and often deadly.

Ehlers Danlos Syndrome

Darlene Clarke (pictured) has to wear braces on her legs and fingers to keep them from dislocating.

"They just look at me they think, 'Wow, you look good,' you know, and it's very frustrating because it's all inside where you're falling apart," Clarke told affiliate Web site NewsNet5.com in Cleveland.

EDS weakens your elasticity. The glue that holds your cells, joints and organs together just sort of melts for people with EDS.

"They're somewhat living with a ticking time bomb that we can't track very well," said Dr. Brian Clark, with the Cleveland Clinic.

EDS is often misdiagnosed as arthritis, or patients are written off as being double-jointed.

Booth said that the scary fact is there's no explanation for who gets the syndrome or why they get it. It doesn't matter how much you work out or how much you eat; it's just a random birth defect.

"If your mother or father had it, you have a 50 percent chance of inheriting it. Other cases are simply brand new. They're the first cases that show up in the family," Clark said.

And family is what Clarke worries about most.

"If I'm this bad now, what am I going to be like when I'm 50, 60 years old? How big of a burden am I going to be on my family?" Clarke asked.

But Clarke is anything but a burden to those around her. With 17 years of nursing experience behind her and the help of her husband, Keith, she started the first Ehlers-Danlos support group in the state.

It arms EDS patients with what they need most -- support, understanding and information.

"She's an inspiration to me and she's my support group, too," Keith Clarke said.

There is no cure for Ehlers Danlos syndrome. However, doctors said high doses of vitamin C can help, and sometimes surgery does, too.

Though most people have never heard of EDS, it is not a rare disorder. For more information, check out the EDS Web site.

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