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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.
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LOAD-DATE: January 25, 2007
LANGUAGE: ENGLISH
PUBLICATION-TYPE: Transcript
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