Thursday, Oct. 2, 2008

Meriden woman spreads word about EDS

by Clarke Davis

Laura Wright was born with the rare disease known as Ehlers-Danlos Syndrome, a hereditary genetic disorder that runs the gamut from mild to life-threatening.

Because of its rarity — only one in 5,000 have it — few are aware of it, which complicates matters. Early diagnoses is important for treatment and ignorance of the disease within the medical establishment can often cause greater problems.

Wright, who went to high school in Oskaloosa and now lives in rural Meriden, is president of the Kansas Educational EDS Support Group.

This organization is working to become chartered as a nonprofit group and is affiliated with the national foundation for EDS. Its first meeting was held in June and a second one is scheduled with a pot-luck at 1 p.m. Saturday, Oct. 11, at her home located on 94th Street just east of Highway K-4.

The group so far numbers about a dozen from all over Kansas. Drawing awareness to the disease and encouraging research are the core reasons for the organization, along with the need to provide support for one another.

While symptoms vary widely, they are all ultimately due to faulty or reduced amounts of collagen. This often results in unstable, flexible joints that are painful and easily dislocate.

Lacking collagen, which gives strength to ligaments, causes them to be overly stretchable. Skin, blood vessels, and organs are all subject to thin walls and rupture.

Wright said many people went to their graves undiagnosed only a few decades ago.

Laura was 8 years old when she first broke an arm and the bone never healed. She was 13 when she was diagnosed with EDS at the KU Medical Center.

Today she is a 38-year-old mother of three children and stepmother to three more. Her husband, Lawrence, is a mechanic for the Goodyear Tire & Rubber Co. He has a son who will soon leave for Iraq with the U.S. Army. They are caring for two 16-year-old boys in their home. Last week Laura was babysitting with a 2-month-old infant, her first grandchild.

The prediction, however, was not that good.

“My parents were told I would be restricted to a wheelchair and not live past 29,” she said. “I’ve got that beat.”

She said her parents were in denial and would never accept that prognosis.

“They did me a great favor by never treating me as though I was sick,” she said. “They treated me like a normal child and that made me a strong person.”

She, too, tried to be a normal high school kid but it wasn’t always easy to fake it.

“I didn’t want everyone to know I had EDS, so many times other students thought I was making up stuff to get attention . . . I’d have a brace on a leg and then an arm and then my neck,” she said.

She went out for track but soon blew a knee.

“That was the end of that,” she said.

It was not her last setback.

She was a working woman, holding a job in the state Department of Health and Environment. During a commute her car was rearended in Topeka and the shock was too traumatic. This did put her in a wheelchair for four months and on the disability list.

On the Internet she scrolls down the long list of health problems that can arise, a great many of which she has had to deal with. Her heart rate is more than twice as fast as a normal person. That bone in her left forearm that she broke when she was 8, still separates from the wrist. One elbow is locked and will not let the arm straighten. There’s been surgeries and most recently her lungs shut down and that took a hospital stay.

Wright has a 19-year-old daughter and a 16-year-old son who have experienced mild forms of EDS. The daughter has had some surgeries on her legs to reset and pin the kneecaps.

Laura has a Lawrence physician, who was familiar with EDS and is a great relief to her.

She’s been in emergency rooms with a leg problem and personnel are trying to get her to use crutches.

“They don’t understand how crutches would cause my shoulders to pop out,” she said. “Our treatment can’t be like that of others with the same ailments.”

Along with all the physical ailments, there’s stress and emotional problems related to depression.

While she said there are both good and bad days, Laura works to keep in shape, keep her muscles toned, watch her weight, and stay busy with her newest project — the EDS support group.

“I’m so grateful for my family and the kids. They’re my protectors,” she said.