Sufferers of Inherited ‘Body Glue’ Ailment Find Help in Unique Clinic : Ehlers-Danlos: Detroit foundation deals with a little-known syndrome in which the ‘glue’ that is supposed to hold bodies together simply doesn’t.

From “floppy” babies with dislocated hips to people grateful to have lived to age 50, the group of patients who gathered at Hutzel Hospital had something in common: The collagen “glue” that is supposed to hold their bodies together doesn’t.

A little-known disorder of the connective tissues, Ehlers-Danlos syndrome, creates loose connections in its victims’ bodies: ligaments that stretch, tissues that tear and joints that easily dislocate.

The condition, often inherited, affects an estimated one in 5,000 people. It often is misdiagnosed.

Seven-year-old Stephanie Hicks was lucky enough that her case was discovered early. The Louisville, Ky., girl was born with a dislocated hip, had surgery at age 6 and spent 10 weeks with her torso and most of one leg in a case.

This is lucky?

Ehlers-Danlos children also can damage themselves easily--for example, with finger tricks like bending a pinky back until it is flat against the hand.

Mark Lavallee was diagnosed at age 3. Now 24, the Penn State University medical student never let the instability of his joints or the fragility of his skin slow him. He used weightlifting to overcome his tendency to dislocate joints. He has worked as a firefighter.

But he paid for his tenacity. He has spent a lot of time at the plastic surgeon’s office and has severe scarring.

Bonnie Harp, of Phoenix is happy to have beaten the odds and lived to age 56. For four generations, some of her relatives have died in their 40s because of the syndrome.

Harp has had operations for collapsed lungs, pulmonary embolisms, spinal and gynecological problems. “I’ve been called a freak many times,” she said.

There were many dramatic stories shared at a gathering in August by 78 patients at Hutzel Hospital. People told of spontaneous bleeding and multiple surgeries, careers derailed and parents wrongly accused of abusing children who bruise at the lightest touch.

Sufferers from across the United States and Canada came to the hospital for a clinic, to be examined by professionals from five medical specialties in order to establish a database about the mysterious syndrome.

The disorders that make up the syndrome have an array of symptoms bewildering to doctors as well as patients, differing among the 10 known types of the syndrome and among individual patients.

Patients ranging from 1 year to over 60 were prodded, questioned and measured in a project organizers said was the first of its kind for any disorder.

The clinic was the fourth annual conference of the Ehlers-Danlos National Foundation, headquartered in suburban Southgate.

Earlier conferences provided information and support for patients. But as doctors at those meetings listened to patients, “It became obvious that what we knew about was a tiny fraction of what we ought to know about EDS,” said Mark Evans, a gynecologist and geneticist at Hutzel.

Evans, along with Nancy Rogowski, who created the foundation, and Dr. Petros Tsipouras of the University of Connecticut in Farmington, planned the clinic.

“We generated more data about Ehlers-Danlos in these three days than has ever been known in the history of the world,” Evans said.

Although Evans said he sees limited potential for a cure for Ehlers-Danlos, Tsipouras believes the syndrome may be cured one day through gene therapy.

For more information about the Ehlers-Danlos Syndrome, contact the Ehlers-Danlos National Foundation at P.O. Box 1212, Southgate, Mich., 48195.