A Rare Disorder: Stretchy Skin


"If Garry had come to us and he had stretchy skin and he had no personality and he wasn't a good showman, we wouldn't have taken him," Haze said.

Living in Pain

When asked whether it hurt to stretch his skin, Turner said, "No, not at all." But that's not the same as living with constant pain.

In the moments before showtime at the Circus of Horrors, the backstage dressing room is its own kind of circus.

Amid all the activity, it would be easy to miss Turner applying a morphine patch. These small patches of a powerful painkiller are not used for his performance but for the searing pain he feels beneath that stretchy skin.

Though Turner's skin has made him oddly famous, his joints command his agonizing attention. From the moment he wakes up, he's in pain. The EDS that loosens his skin also makes his joints excruciatingly frail, a condition common to many living with the ailment

'This Is a Real Disorder'

More than 3,000 miles away, near Detroit, another person struggles with EDS as well, but he has to do it from a wheelchair.

"I'm rarely walking around," said Dylan Keil. "I mean, the more I walk, the more I'm in pain."

At 19 years old, Keil doesn't have Turner's stretchy skin, but his joints are so frail that he requires massive pain medication and lives mainly in his room, sometimes sleeping up to 40 hours in a row. It has made it impossible for him to attend school regularly.

Both Keil and his mother, Cindy, have been diagnosed with EDS, though the son's condition is much more serious.

Cindy and Dylan Keil said they're taking part in a study that Dr. Nazli McDonnell at the National Institute on Aging is conducting.

"I have some EDSers who are only 18 years old, and their spine looks like someone who should be 80 years old," McDonnell said.

McDonnell's work suggests the joints of EDS patients undergo premature aging. If so, progress with EDS research could help with more common problems like arthritis. This rare disorder often remains undiagnosed, though.

Look on YouTube for people with incredibly flexible joints, and McDonnell said you'll see people who may have EDS and not even know it.

"By doing those things, they're making more damage to their joint, and they're probably gonna end up needing an operation on that joint 10 years down the road," she said.

The images of people contorting themselves on video bring images of a circus sideshow back to mind, and Cindy doesn't appreciate that at all.

"I don't like it," she said. "It makes us look like freaks. The old sideshow days. This is a real disorder that's very, very painful."

Keil has a different perspective.

"It's not really a problem for me," he said. "I mean, there's not much that we could do besides sitting at home or using what [we've] got. A lot of people use their talents."

Making a Living

Back at the Circus of Horrors, "Stretch" Turner uses his EDS to make a living.

As for Turner, his doctors believe that, despite his curious condition, he is likely to live a normal life.

Normal -- as anyone in the circus will tell you -- is a matter of interpretation, though.

For more information on Ehlers-Danlos syndrome:

Ehlers-Danlos Support Group

Ehlers-Danlos National Foundation

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