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Eds/hypermobility


juliegee
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Hi All,

I know that many here suffer from Ehlers-Danlos Syndrome (EDS) and others worry that they may the disorder. Primetime is doing a show tonight on ABC on EDS. I'm not sure what time, 8 or 9PM EST?

Julie

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I was just about to post this topic too as I just saw a commercial.

I went to the website and I'm a little worried that they won't do a good job on this story but I suppose we just have to watch and see. The "first impression" from the website isn't the greatest.

Here's a piece from the website: (you can read this yourself on http://abcnews.go.com/Health/story?id=2815904&page=1

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.

Elastic Skin And More!

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.

Watch the story on "Primetime: Medical Mysteries" and go to ABCNEWS.com during the show to solve a real medical mystery.

Ehlers-Danlos Syndrome

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.

Paper Thin Skin

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

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Well, in ABC's defense, they did point out that this "gary stretch" guy seemed to be 'mocking' the disease. And they DID show him putting on morphine patches b/c his joint pain is so intense (due to EDS). They also showed a 19 year old "normal" guy who didn't have the "skin stretch" symptom, but had loose joints and severe pain and he was disabled by it.

In the beginning they mentioned the 3 ways it affects the body- stretchy skin, loose joints, loose vessels.

I have loose joints and loose vessels (Hopkins found this out years ago and explained why this exacerbated my Orthostatic Intolerance). Why didn't Primetime show someone with loose vessels? Maybe they could have then mentioned Orthostatic Intolerance, you know? (Being that if your veins are loose and stretchy, your blood pools into your feet and hands, causing black outs b/c blood is not up in your vital organs where it needs to be). That's my problem. I was bummed they didn't go into that subject.

Any other thoughts??

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I watched like five minutes of it. I couldn't stand seeing him using his medical condition in that way. To me, it would be like a Dysautonomic standing up in front of an audiance until they passed out, just for the attention. I think that if Gary wants to raise EDS awareness that he could find a better way, rather then being a freak show.

My best friend possibly has Hypermobility EDS like me, and when she brought this up to her one doctor, he told her, "No, you don't have Ehlers- Danlos Syndrome. Those kind of people are freaks, they are circus people."

I just did not like the show. :)

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Hi All, I just wanted to let you know that I sent a letter to ABC in NY, as well as my local affiliate to complain about potraying EDS patients as a circus freak show act. EDNF also sent out an advocay alert on this one. Anyone who wants a copy of the EDNF email, just send me a private message and I'll send it to you. Nina

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I wish they would have had more focus with Dr. McDonnell and the young man who is affected so bad with his EDS that he has to use a wheel chair. If they want to interview the gentleman from the UK---the focus should have been on the realities of his EDS, not the freak show.

While I'm glad something on EDS was aired on TV, I think they should have not included the freak show, and kept things at a serious level. EDS is a serious disorder. I did not realize how much pain EDS can cause, and how disabling it can become.

Maxine :0)

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