There’s a relatively rare skeletal condition that cause people to be overly-flexible--and most who have it don’t know it, until bad things start to happen.



Remember when you were a kid there was always someone who could bend their thumb all the way against the hand; it’s the kind of stuff that made for great side show freaks:

elastic man, the human pretzel. But it’s a real condition--or rather, set of conditions--under one heading known as Ehlers-Danlos syndrome.

Gerri Zatlow has it. “I used to be able to do circus tricks, I could move my arms around, I was able to put my hands down, behind my back. But there are consequences for people with Ehlers-Danlos, and if you don’t know it the consequences can be lethal.”

Dr. Jonathan Deland, a foot and ankle surgeon at the Hospital for Special Surgery, says, “The collagen, or connective tissue has a defect because of a genetic, it’s a genetic disorder and it is too elastic, too flexible. It affects various parts of the body. Commonly joints, joints become hyper mobile, ligaments ah loose so the joints are hyper mobile, and therefore it’s associated with joints going out of place, tendons going out of place, deformities because the joints go out of place.”

Gerri’s thumb just dislocated, but that’s not why she’s here today. It’s for follow up on a procedure to get an ankle ligament back into place to help relieve the pain. “Feet and ankles. I ruptured, I dislocated my thumbs, I dislocated my knee caps and I ruptured tendons in my feet and my ankles,” says Gerri.

She’s already had a huge procedure on her other foot, which collapsed and became flat. Doctors shifted the bones, put a wedge of bone in to act as a strut, and gave her a pain-free functional limb again.

“Most people who have it, don’t know they have it. They find out after they rupture. People find out they have vascular EDS when they are autopsied very often. They find out when they die,” states Geri.

Fortunately she knows now, and wants to get the word out to those who might not know so that serious injuries don’t happen, and so they know how to get treatment.

Dr. Susan Goodman, a rheumatologist at the Hospital for Special Surgery, says, “We have real practicable day to day, physical improvement, in both our surgical technique and our management, medical management of the illness.”

“Moving joints around, moving heels, moving knee caps, is just amazing and this Hospital for Special Surgery, is on cutting edge technology and he has improved the life for people with Ehlers-Danlos,” adds Gerri.

Gerri says she was “floppy” as a child. She was clumsy and fell down a lot, and that’s what was the tip-off to her parents to have her evaluated.

For More Information on EDS, click on to http://www.ednf.org

And in the NYC Area, the EDS NYC Local Group can be reached at (212) 319-2332.