Lavallee himself has the classical type of EDS. He likens it to having skin made of tissue paper, where others have construction paper. When the average person falls and gets an abrasion, he says, someone with classical EDS gets a much larger, more troublesome wound, difficult to sew up because the needle tears the skin. That form is also marked by noticeable scarring, bony protrusions and some dislocations of joints, though not to the extent of someone with hypermobile EDS. And while bleeding is a huge problem for those with vascular EDS, it's not insignificant in the other types, either.

There's no prevention for the genetic disease, and experts are trying to develop diagnostic tests for the nonvascular forms of EDS, Lavallee says. They're collecting blood and tissue samples, but the task is complicated because the body produces 11 different types of collagen from skin and nails to tissue and tendons, all found in multiple locations on various chromosomes.

There's also no disease-specific treatment.

"A lot of it is common-sense things like diet and exercise and not smoking and avoiding activities that will wear out the joint," he says. "The other is strength training. The muscles are fine, it's tendons that are problematic. If you keep the muscles strong, there's less laxity and dislocation." Lifting weights tends to strengthen tendons and ligaments, too, he says, and "a thicker and stronger tendon is better than a weaker, flabby tendon." But it has to be mild strength training.

An aortic complication is often present for those with classical or hypermobile EDS, so he urges caution with breath holding and strength training for those patients. "We monitor blood pressure diligently and get contrast to look at the baseline aorta and internal organs."

The foundation is making a huge effort to educate the public and physicians, Lavallee says. They've created medical reference guides and are doing outreach to conferences for rheumatology, for instance. They produced an educational CD, patient education resources and more. Their Web site, www.ednf.org, is packed with information.

Atwood hasn't had to rush to the emergency room since she graduated from the children's hospital. But she and her husband recently moved to Atlanta, which has left her mom feeling unsettled. "When she moved in September, I spent most of my time crying. I miss her, yes, but I'm scared to death."

EDS is something patients, properly diagnosed, learn to live with. They teach themselves to avoid as many of the episodes as they can. When Chambers feels like her ankles are particularly weak, she puts on ankle braces until they feel more stable. Some days she does well and on other days her joints are "really loose" and she has a lot of pain.

EDS did provide her with one bonus. She started receiving treatment at Shriner's Hospital for Children and along the way befriended a physical therapy assistant who was working there while he went to college. They stayed friends, though they drifted apart as her condition stabilized. Years later, they got reacquainted and they are now married with their own little boy.

Elijah is 10 months old and they're watching him for signs of EDS. The type she has confers a 50-50 chance a child will inherit it.

She's also maintained a sunny disposition, despite chronic pain. "There's nothing I can do about it, so why not be happy?" she tells her mom.

"I know my limitations and things I should avoid. That's how I control it."

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E-mail: lois@desnews.com