Conference Will Examine Connective Tissue Disease
The rubber man in the circus sideshow may have looked funny, but he probably was not having much fun.
His extreme flexibility most likely was a symptom of Ehlers-Danlos syndrome, a disorder that also meant a lifetime of easy injury, slow healing and chronic pain.
Little is known about the disease, and in an effort to gather information, specialists will examine people at the fourth annual National Learning Conference of the Ehlers-Danlos National Foundation.
Ehlers-Danlos syndrome is a group of inherited disorders of the connective tissue, often characterized by hyper-elastic skin that can bruise or tear easily, poor wound healing and loose joints that are prone to painful, recurrent dislocations.
As many as one in 5,000 people may be affected.
Extreme cases include problems such as gastrointestinal perforation or spontaneous arterial rupture. Several forms can cause premature births or bleeding or tearing during childbirth. Children who repeatedly show up at hospital emergency rooms with bruises, gaping wounds or joint dislocations have been mistaken for battered children.
Nancy Rogowski, who created the foundation in 1985 and is its executive director, was one of those children.
She has undergone more than 30 joint repair and replacement surgeries. Rogowski is hoping she can avoid another operation on her jaw, which would mean she would have to attend the conference with her jaws wired shut.
The conference will bring together clinical geneticists, orthopedists, ophthalmologists, gynecologists and urologists. They will examine participants in order to provide expert advice on their disorder as well as collect clinical information to establish a data base for research.
The conference, scheduled Aug. 5-8 in Detroit, is open to anyone who has a confirmed or suspected diagnosis of Ehlers-Danlos, their family and friends, and interested medical professionals.
The registration cost of $170 for foundation members, $200 for non-members and $40 for children under 10 includes admission to all lectures and workshops. Lower rates can be arranged for people who cannot afford the fees.
Those who do not have insurance will not be charged for laboratory fees connected with the clinic. The medical professionals involved are donating their time.
