ABC News Transcript   January 24, 2007 Wednesday   SHOW: PRIMETIME LIVE 10:37 PM EST ABC   STRETCHY SKIN; EHLERS-DANLOS SYNDROME   ANCHORS: JAY SCHADLER   REPORTERS: JAY SCHADLER (NEW YORK, NY USA)   LENGTH: 3034  words   CONTENT: GARRY 'STRETCH TURNER, NORWICH, ENGLAND, LINCOLNSHIRE, EHLERS-DANLOS SYNDROME, CIRCUS OF HORRORS ANNOUNCER 'Primetime: Medical Mysteries" continues. Once again, Jay Schadler. JAY SCHADLER (ABC NEWS) (Off-camera) Medical mysteries and circus sideshows have a long and mostly sad history. Tonight, we explore a modern version of that phenomenon through the eyes of an extraordinary man. We caution you that some of the images you are about to see may be unsettling, but the main character is an unforgettable lesson in appearances being only skin-deep. Our story begins in a little town in England, about 100 miles northeast of London. JAY SCHADLER (ABC NEWS) (Voiceover) With its rolling river, quaint streets and old churches, you wouldn't think Norwich, England would have much sympathy for the devil. But it does. It's billed as the 'Circus of Horrors," a two-hour touring extravaganza, packing the house wherever it goes and featuring everything you don't want to see but can't stop looking at. But the star of this show and the reason we came is a fellow aptly called...  DOCTOR HAZE (CIRCUS RINGMASTER) Garry Stretch. JAY SCHADLER (ABC NEWS) (Voiceover) Garry Stretch. Garry has a rare genetic disorder that severely weakens a person's joints, blood vessels, and, in his special case, his skin. Garry will be on this stage three times tonight, but backstage, he'll be with us. JAY SCHADLER (ABC NEWS) (Off-camera) Garry, this is the first time that I've seen your torso. It looks quite amazingly normal. GARRY "STRETCH" TURNER (PATIENT) Uh-huh. Just have a feel. JAY SCHADLER (ABC NEWS) (Off-camera) What is that? GARRY "STRETCH" TURNER (PATIENT) Like my belly, for instance, it will stretch a little further than more skin does. JAY SCHADLER (ABC NEWS) (Off-camera) Oh, my God. It doesn't hurt at all to do that? GARRY "STRETCH" TURNER (PATIENT) No, not at all. JAY SCHADLER (ABC NEWS) (Off-camera) And - it seems to be very elastic, it goes right back into, into place. GARRY "STRETCH" TURNER (PATIENT) Yes, it twinges straight back. JAY SCHADLER (ABC NEWS) (Off-camera) What do you think? BACKSTAGE CREW (FEMALE) It's, it's Garry. JAY SCHADLER (ABC NEWS) (Off-camera) It's Garry. JAY SCHADLER (ABC NEWS) (Voiceover) Yes, it is. Garry Stretch was born Garry Turner, 37 years ago in Lincolnshire, England. JAY SCHADLER (ABC NEWS) (Off-camera) As a child, did you have medical conditions or issues that were unusual? GARRY "STRETCH" TURNER (PATIENT) Probably, the only clues that my mother had was the midwife said that I had very loose skin. And that was the only clue that she remembers. JAY SCHADLER (ABC NEWS) (Off-camera) She noticed that even as a baby? GARRY "STRETCH" TURNER (PATIENT) Yeah, yeah, the day that I was born. JAY SCHADLER (ABC NEWS) (Voiceover) Growing up, he loved sports, but injuries were constant. GARRY "STRETCH" TURNER (PATIENT) I used to get horrendous bruising when I used to take a knock, and a blood vessel burst, and the blood would just keep pumping and pumping and there's no tension in the skin to hold the bleeding blood. And physicians just thought I was a hemophiliac. JAY SCHADLER (ABC NEWS) (Voiceover) Finally, at 13, he was diagnosed with an extreme case of Ehlers-Danlos Syndrome, EDS. EDS is a genetic disorder that afflicts people in a variety of ways, from mild joint dysfunction to fatal blood vessel hemorrhages. Overall, it affects about one in 10,000 people. However, the odds of Garry's special variety of the disease are astronomical. GARRY "STRETCH" TURNER (PATIENT) If you look at your own skin cells under a microscope, they'd be nice and round and locked in many places. But my skin cells tend to be more jagged, and don't fit together quite so well. So, the, the kind of best way to describe it is I'm built rather like a badly woven basket, if you can imagine that, which will pull apart. JAY SCHADLER (ABC NEWS) (Voiceover) Here's another example of what Garry is talking about. Normal cells in our body 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 cases can produce Garry. GARRY "STRETCH" TURNER (PATIENT) It's actually twice as thin as regular skin as well. Although, you wouldn't believe it, you know, to, to look at it. JAY SCHADLER (ABC NEWS) (Off-camera) Right. GARRY "STRETCH" TURNER (PATIENT) But it's actually quite paper-thin. You can see the light through it. JAY SCHADLER (ABC NEWS) (Voiceover) Do you ever feel the compulsion to tell people, this is not some sideshow? "This is my life, this is a disease." GARRY "STRETCH" TURNER (PATIENT) No. No, I don't want people to feel any sorrow for me in any kind of way. I want them to see my show and hear me this way, and not, 'Oh, look at that poor guy." I don't want that. Any more silly remarks like that and I'll be giving you a very long stretch. JAY SCHADLER (ABC NEWS) (Voiceover) Curiously, Garry says the one time he did feel the sting of ridicule was when his rare case was being diagnosed and doctors from across Great Britain came to peek and probe. GARRY "STRETCH" TURNER (PATIENT) I remember seeing some 80 physicians on one certain day, they're coming in like groups of eight or 10. That was kind of my first sideshow. But that's how I felt. JAY SCHADLER (ABC NEWS) (Off-camera) And the doctors were the... GARRY "STRETCH" TURNER (PATIENT) Were the audience. JAY SCHADLER (ABC NEWS) (Off-camera) Were the audience. JAY SCHADLER (ABC NEWS) (Voiceover) From the bearded lady to the elephant man, a mixture of pathology and pathos was always a sure way to bring people into the circus tent. JAY SCHADLER (ABC NEWS) (Off-camera) Do you ever feel exploited by being in a circus-like performance like this? GARRY "STRETCH" TURNER (PATIENT) Not at all. JAY SCHADLER (ABC NEWS) (Off-camera) None? GARRY "STRETCH" TURNER (PATIENT) No, I feel that it is my choice, and that feeling of making people laugh, about making 1,000 people laugh at the same time, is a great feeling. So, for that reason alone, I love the stage. JAY SCHADLER (ABC NEWS) (Off-camera) I was stunned when I watched last night. I didn't know exactly what to expect. I felt a little ashamed watching, and I'll be honest with you. GARRY "STRETCH" TURNER (PATIENT) Perhaps you're with a different perspective because you kind of knew me before I was doing the performance and I hope the audience have (sic) a different perspective on me and seeing me more as a cartoon character, as a performer. JAY SCHADLER (ABC NEWS) (Off-camera) You don't mind that? GARRY "STRETCH" TURNER (PATIENT) Not at all. CLIP FROM "RICHARD AND JUDY" DOCTOR HAZE (CIRCUS RINGMASTER) Welcome back. And if you're a little bit squeamish watching, be warned, this is a little extreme. GUEST (FEMALE) Oh, my God, oh, oh. JAY SCHADLER (ABC NEWS) (Voiceover) In fact, Garry actively promotes the show on British television whenever he can and more often than not at his side is the circus ringmaster who goes by the name of Dr. Haze. JAY SCHADLER (ABC NEWS) (Off-camera) Some people would say you're exploiting that medical condition. DOCTOR HAZE (CIRCUS RINGMASTER) If Garry comes to see us and he had stretchy skin and he had no personality, and wasn't a good showman, we wouldn't have taken him. But he was a great showman and you'll see the audience will love him. JAY SCHADLER (ABC NEWS) (Voiceover) But like all showmen, Garry's performance is part illusion. What the audience does not see you are about to. JAY SCHADLER (ABC NEWS) (Off-camera) Is that morphine? JAY SCHADLER (ABC NEWS) (Voiceover) As the spotlight dims and darker things about this disease are revealed. COMMERCIAL BREAK JAY SCHADLER (ABC NEWS) (Voiceover) In the moments before show time the backstage dressing room is its own kind of three-ring circus, with some of the rings in places they don't belong. JAY SCHADLER (ABC NEWS) (Off-camera) That hurt just a little or not? CIRCUS PERFORMER (MALE) No, no. JAY SCHADLER (ABC NEWS) (Voiceover) Amid all of this it would be easy to miss what Garry is doing. JAY SCHADLER (ABC NEWS) (Off-camera) Is that morphine? GARRY "STRETCH" TURNER (PATIENT) Uh-huh. Sad little things but you tend to get the hang of them after a while. JAY SCHADLER (ABC NEWS) (Voiceover) A small patch of a powerful painkiller used not for his stretchy skin, which despite appearances doesn't hurt him at all, but that he's used since 2002 for a searing pain beneath that stretchy skin. GARRY "STRETCH" TURNER (PATIENT) It doesn't kill the pain absolutely but it goes a long way to helping it. JAY SCHADLER (ABC NEWS) (Voiceover) Though it's Garry's skin that's made him oddly famous, it is his joints that command his agonizing attention. From the moment he wakes he's in pain. The EDS that loosens his skin also makes his joints excruciatingly frail, a condition common to many EDSers, including this young man more than 3,000 miles away near Detroit. DYLAN KEIL (PATIENT) I'm rarely walking around. I mean the more I walk the more I'm in pain. JAY SCHADLER (ABC NEWS) (Off-camera) So even going up these steps is difficult. DYLAN KEIL (PATIENT) Yeah. JAY SCHADLER (ABC NEWS) (Off-camera) Yeah? JAY SCHADLER (ABC NEWS) (Voiceover) At 19, Dylan Keil does not have Garry's stretchy skin but his joints are so frail that he struggles with each step, requires massive pain medication and lives largely in his room. DYLAN KEIL (PATIENT) I know a lot of kids think that, you know, being home, not being at school, they would be kind of cool but you miss it after a while. JAY SCHADLER (ABC NEWS) (Voiceover) Both Dylan and his mom, Cindy, have been diagnosed with EDS, though Dylan's condition is much more serious. They told us that they are part of a study now being conducted by Dr. Nazli McDonnell at the National Institute on Aging. DOCTOR NAZLI MCDONNELL (NATIONAL INSTITUTE ON AGING) I have some EDSers who are 18 years old and their spine looks like someone who should be 80 years old. JAY SCHADLER (ABC NEWS) (Voiceover) Dr. McDonnell's work suggests the joints of EDS patients are undergoing premature aging. If so, progress with EDS research could help with other more common problems like arthritis. But this rare disorder often remains undiagnosed and can show up in the most unlikely of places. For example, Dr. McDonnell says this young man's contortions on YouTube could be evidence of a joint-related EDS problem. DOCTOR NAZLI MCDONNELL (NATIONAL INSTITUTE ON AGING) They think they're being funny but they actually not being funny and by doing those things they're making more damage to their joints. JAY SCHADLER (ABC NEWS) (Voiceover) The images bring the circus sideshow back to mind and we couldn't help but wonder what Dylan and Cindy thought of their fellow EDSer, Garry 'Stretch" Turner. JAY SCHADLER (ABC NEWS) (Off-camera) What do you think of that? CINDY KEIL (PATIENT) I don't like it. It makes us look like freaks. The old side - sideshow days. This is a real disorder that's very, very painful. JAY SCHADLER (ABC NEWS) (Off-camera) How about you, Dylan? DYLAN KEIL (PATIENT) It's not a problem for me. I mean I could - 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. That's what he's got. JAY SCHADLER (ABC NEWS) (Voiceover) In truth, Garry never intended to use his EDS condition to become a circus performer. For most of his life, Garry was working construction setting up scaffolding. The job was brutal on his feeble joints and he was deeply depressed. But all that changed 10 years ago when he met Jane Simons who, at first, was a little worried by Garry's nickname. JANE SIMONS (GARRY'S GIRLFRIEND) I thought they called him Stretch because he had been in prison. JAY SCHADLER (ABC NEWS) (Off-camera) So you figured he'd spent a little time in jail. JANE SIMONS (GARRY'S GIRLFRIEND) Yeah. I thought he's been to jail. JAY SCHADLER (ABC NEWS) (Off-camera) That first moment when he stretched for you, strange? I mean is it... JANE SIMONS (GARRY'S GIRLFRIEND) Very. Yeah. It was really odd. It was, it was horrible. I didn't like it at all. It was, it was kind of spooky. JAY SCHADLER (ABC NEWS) (Voiceover) Spooky but not as strange as love. Jane encouraged Garry to get off the scaffold and get on the stage, to stop hiding his condition and take advantage of it. Local press and TV followed. CLIP FROM "THIS MORNING" DOCTOR NAZLI MCDONNELL (NATIONAL INSTITUTE ON AGING) Okay. The human beer table. JAY SCHADLER (ABC NEWS) (Voiceover) Along with these. GARRY "STRETCH" TURNER (PATIENT) These are my certificates for two world records. I often set the record for clothes pegs. CLIP FROM "THE INDESTRUCTIBLES" PATIENT (MALE) Fifty-five, 56, 57. HOST (MALE) Three to go. PATIENT (MALE) Fifty-eight. HOST (MALE) Two left. PATIENT (MALE) Fifty-nine. HOST (MALE) One hundred and sixty. PATIENT (MALE) One, two, three, four, five. HOST (MALE) He's done it. It's a new Guinness World record. JAY SCHADLER (ABC NEWS) (Voiceover) A Guinness Book of World Records for a feat not likely to soon be challenged. JAY SCHADLER (ABC NEWS) (Off-camera) You would not have entered this world perhaps, and certainly the celebrity part of it if it not been for her. GARRY "STRETCH" TURNER (PATIENT) Before this all started it really was the last thing I'd be doing, working on a stage. Yeah, I really didn't think that I would do that. JAY SCHADLER (ABC NEWS) (Off-camera) So are you thankful for her? GARRY "STRETCH" TURNER (PATIENT) Yeah. JAY SCHADLER (ABC NEWS) (Off-camera) Having done that? GARRY "STRETCH" TURNER (PATIENT) Yeah, I am. Thank you. JAY SCHADLER (ABC NEWS) (Voiceover) Today when he's not on tour with the circus, Garry and Jane live together in this house with a three-legged dog named Christie. GARRY "STRETCH" TURNER (PATIENT) She ran across the road and met a car at 60 miles-per-hour. At the time the vet actually encouraged us to have the dog put down. And I asked him if there was a chance at the quality of life so, he said there's always a chance. So I said give her a, even with a disability, there's always hope. JAY SCHADLER (ABC NEWS) (Voiceover) Doctors believe that despite Gary's curious condition he is likely to live a normal life span. A normal life, however, as anyone in the circus will tell you, is a matter of interpretation. JAY SCHADLER (ABC NEWS) (Off-camera) When we come back, the solution to the real-life 'Medical Mystery" you're solving. Were you able to figure it out before the doctors? This is your last chance to vote in your time zone online or text on your cell phone. We'll be right back. COMMERCIAL BREAK JAY SCHADLER (ABC NEWS) (Off-camera) And now the solution to our solve-it-yourself 'Medical Mystery." Here's how the other people in your time zone are voting so far. GRAPHICS: DO YOU THINK DIANA IS SUFFERING FROM GRAPHICS: (A) NUTRITIONAL DEFICIENCY 27% GRAPHICS: (B) INFECTION 33% GRAPHICS: (C) CANCER 5% GRAPHICS: (D) CIRCULATORY DISEASE 35% JAY SCHADLER (ABC NEWS) (Voiceover) Surprised? Still sure you're right? Let's finally find out. Remember, in this case, Diana, a llama rancher, suffers from a strange rash, swelling in her legs and pain that will not allow her to walk. Imaging failed to reveal any blood clots but things have gotten so severe that surgeons were consulted about relieving the swelling. A senior internist is brought in to consult on Diana's case. DIANA WYMAN (PATIENT) I remember a doctor that was wearing sandals and glasses. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) The red spots that I had expected to see as consistent with vasculitis looked very different. I then began to ask her a couple of questions about her diet. DIANA'S HUSBAND (MALE) I can name what she eats on five fingers. DIANA WYMAN (PATIENT) When I was on the antibiotics I didn't eat much. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) She had a very, very restricted diet. She essentially was subsisting for a very long time on peanut butter. DIANA WYMAN (PATIENT) My day wasn't right without it. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) Well, when I met with the house staff that morning, I said I think she has scurvy. DOCTOR JENNIFER QUINN (DARTMOUTH-HITCHCOCK MEDICAL CENTER) You've got to be kidding. DOCTOR OSEI BONSU (DARTMOUTH-HITCHCOCK MEDICAL CENTER) We all looked at each other in shock. DOCTOR JENNIFER QUINN (DARTMOUTH-HITCHCOCK MEDICAL CENTER) Somebody even went (makes noise). DIANA'S HUSBAND (MALE) The first thing you think, people coming over in their shifts. DIANA WYMAN (PATIENT) That's not me. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) Scurvy is equivalent to vitamin C deficiency. Vitamin C is necessary to construct strong, collagen tissues, which is in blood vessels and in joints, muscles, the heart. DIANA'S HUSBAND (MALE) And pretty soon the pieces just started to fall together. DOCTOR JENNIFER QUINN (DARTMOUTH-HITCHCOCK MEDICAL CENTER) I remember thinking, with scurvy, they have like gum bleeding so I did actually look at her gums and they were purple. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) One of the earlier accounts of this described a tremendous amount of fatigue that some of these sailors would feel. DIANA'S HUSBAND (MALE) And that's when they dump in to IVs and vitamin C and within 12 hours, it started to make a big difference. JAY SCHADLER (ABC NEWS) (Voiceover) So if you chose, option A, nutritional deficiency, you were right. Diana had scurvy, vitamin C deficiency, because of her limited diet. DIANA WYMAN (PATIENT) Within 48 hours, I was getting my feet back. DOCTOR JONATHAN ROSS (DARTMOUTH-HITCHCOCK MEDICAL CENTER) I thought the house staff did a very good job. They got the tests done that would look for bad things that could really harm her. DIANA WYMAN (PATIENT) I got to take care of my self first and then my husband and my llamas. JAY SCHADLER (ABC NEWS) (Voiceover) Next week, we'll give you another case, another chance, for you to be the doctor. JAY SCHADLER (ABC NEWS) (Off-camera) That's our show for tonight. But next week, we'll be back with an all-new installment of 'Primetime: Medical Mysteries," including a mystery you can solve for your self. I'm Jay Schadler. And for all of us at 'Primetime," good night. FOR INFORMATION ON ORDERING A VIDEO OR TRANSCRIPT COPY OF ABC NEWS OR ABC NEWS NOW PROGRAMMING, PLEASE VISIT THE SECURE ONLINE ORDER FORM LOCATED AT WWW.TRANSCRIPTS.TV   LOAD-DATE: January 25, 2007   LANGUAGE: ENGLISH   PUBLICATION-TYPE: Transcript     Copyright 2007 American Broadcasting Companies, Inc. All Rights Reserved