A Rare Disorder: Stretchy Skin


Jan. 23, 2007 — -- Norwich, England, is home to rolling rivers, quaint streets and old churches, so it might be surprising to learn that it's also home to the Circus of Horrors.

From the bearded lady to the elephant man, mysterious medical conditions have a long history of attracting audiences to a circus tent. And those days have not disappeared. The crowd lining up in a theater lobby for tonight's performance proves the "freak show" is not a thing of the past.

The Circus of Horrors is a touring extravaganza, packing the house wherever it goes. It features everything people don't want to see but can't stop looking at. The show includes all sorts of characters with all sorts of body piercings and tattoos. But the star of this show is 37-year-old Garry "Stretch" Turner, and his wild skin-stretching act.

Turner suffers from an extreme case of Ehlers-Danlos syndrome, a rare genetic disorder that can severely weaken a person's joints, blood vessels and in Turner's case, skin. The disorder, which most commonly attacks a person's joints, affects about one in 10,000 people. However, the odds of Turner's special variety of the disease are astronomical.

The skin on Turner's body is truly elastic. "If [you] … look at your own skin cells under a microscope, they'd be nice and round and lock in many places. … But my skin cells tend to be more jagged, and don't fit together quite so well," he said. "The best way to describe it is I'm built rather like a badly woven basket, if you can imagine that, which will pull apart."

Normal human body cells are held together by a kind of chemical glue called collagen, which keeps them tightly bound. But the collagen of someone with EDS is misshapen and loose, which, in the most extreme and rare circumstances, produces skin like Turner's.

Backstage at the Circus of Horrors, Turner demonstrates how the skin on parts of his body can be pulled away. "There's areas of skin, like on the belly, for instance, that will stretch a lot further," he said.

"It's actually twice as thin as regular skin," he continued. "Although you wouldn't believe it to look at it … it is actually quite paper thin."

Turner's condition was obvious from the day he was born. "The midwife said that I had very loose skin, and that was the only clue [my mother] remembers … I had loose skin."

Growing up, Turner loved sports, but injuries were constant until his condition was diagnosed at age 13.

"I used to get horrendous bruising when I used to take a knock, and a blood vessel would burst," he said. "The blood would just keep pumping and pumping, and there's no tension in the skin to hold the bleeding. The physicians just thought I was a hemophiliac."

Turner doesn't feel exploited by the circus. "Not at all," he said. "I feel that it is my choice, and that feeling of making a thousand people laugh at the same time is a great feeling. So, for that reason alone, I love the stage. … I don't want people to feel any sorrow for me in any kind of way."

Curiously, Turner said the one time he felt the sting of ridicule was when his rare case was being diagnosed, and doctors from across Great Britain came to peek and probe.

"I remember seeing … some 80 physicians on one certain day … and that was kind of my first side show."

Turner actively promotes the Circus of Horrors on British television, often accompanied by the circus ringmaster, who goes by the name "Dr. Haze."

"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.

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

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."

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:

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