Skip to main content
U.S. Edition


Return to Transcripts main page


Mind Over Pain; Dangerous Light; Brain Overload; Afraid to Sleep; Feeling No Pain; Addicted to Plastic Surgery

Aired February 20, 2006 - 23:00   ET


DR. SANJAY GUPTA, CNN SENIOR MEDICAL CORRESPONDENT (voice-over): Dr. Kaveh Alizadeh, a plastic surgeon from New York, is here, among the Suni sect of Sufis.

He came to Kurdistan to perform cleft lip and palate surgeries.

But a Kurdish colleague has brought him to see a secret ritual that Westerners rarely, if ever, are allowed to see.

Inside the mosque, it's all men and boys. Women aren't allowed here. By day, these men hold jobs and have families. But once a month, they gather to do something only extreme Sufi Sects do -- mutilate themselves. Their ritual begins with a driving drumbeat and chanting to Allah.

DR. KAVEH ALIZADEH, PLASTIC SURGEON: They started mentioning lines from the Koran, which essentially, as it relates to Mohammad being the prophet of God and there's no god but God. So they started taking those sequences of the Koran and essentially making it shorter and shorter as they increasing the pace of the chants, and as they started getting the trance itself.

GUPTA: It's rare to even see a Muslim man's hair, but during this ritual, they remove their turbans. The spell deepens. And they begin their journey to show their God the power of their faith. Their minds over their bodies.

ALIZADEH (voice-over): It was almost as if they wanted to be more liberated. So, in this sense of taking their turban off and losing that sense of identity that they have and becoming who they are -- really are.

(On camera): As we were standing there, we felt drawn into this, the passion of what was going on there. It's pretty intoxicating.

GUPTA: Dr. Alizadeh is transfixed as the ritual takes a shocking turn. The self-mutilation begins. This man bites into a fluorescent light bulb. Outwardly, showing no pain.

ALIZADEH (voice-over): He walked towards us, sort of almost an act of defiance to say look at me and look at what I can do to myself. And that's when he broke the fluorescent light bulb and he started chewing it in front of us. And he very much wanted us to know that he doesn't feel anything. GUPTA: The men are in a frenzy. Several have taken these skewers and thrust them right through their face. In one side, out the other. No hesitation and no apparent pain. Of course, I was left wondering why? Why do this?

Dr. Alizadeh says this is how they explained it to him.

ALIZADEH: The idea behind -- at least this sect of Sufis -- or as to show that by proving to themselves that they don't feel pain, to prove that they don't have the human experience at that moment and they have detached themselves from the sense of the self. And therefore, they can enter their spiritual self.

GUPTA: Now, the chief appears. He deftly pulls skewers from this man's face. There is no blood.

And this old man barely flinches as two skewers pierce his chest. Remarkably, he doesn't bleed as the chief pulls them out.

After the ritual, we spot this man again, with only drops of blood dotting his white shirt.

ALIZADEH: From a medical perspective, I was constantly trying to understand. How can you actually train yourself to within minutes, to be able to be in a phase where you don't feel pain as much and you don't have as much bleeding.

GUPTA (on camera): We wanted to show you this incredible footage, not because it's something you should ever try yourself, but to understand whether we as humans can control the way we feel pain.

For some answers, we turn to Dr. Herbert Benson, one of the country's top researchers in the mind body connection.

This is some of the most remarkable, dramatic stuff.

DR. HERBERT BENSON, PRESIDENT, THE MIND BODY INSTITUTE (voice- over): Isn't that painful, just to imagine what that's like.

(On camera): Our mind is an incredibly important medical tool that can certainly counteract the harmful effects of stress, but often extend itself into these remarkable feats, such as we're viewing here.

GUPTA (voice-over): Our first question, how do the Sufi mystics control pain?

BENSON (voice-over): The peripheral nerves are, of course, transmitting painful stimuli, but the interpretation aspects of the brain are shut off. So you feel no pain.

(On camera): You see this in athletes. Often they can perform under what would be tremendously painful stimuli for others. They just ignore it and keep on going, often injuring themselves in the process.

GUPTA: So the mind can turn off, not registering pain. But explaining the lack of bleeding is harder to do. It could be all the adrenaline surging through their bodies. Or it could be that they willed themselves not to bleed.

(On camera): I mean, to a lot of people listening, this sounds outrageous. This sounds like quackery. How can your mind not only control pain, but control bleeding/

BENSON: I don't know that. But clearly we are seeing mind body affects that traditional medicine does not teach us.

GUPTA (voice-over): Dr. Benson has spent 40 years looking beyond traditional medicine, to the mind for answers. He conducted landmark research, showing Tibetan monks who while in frigid conditions, could generate enough body heat to dry wet bed sheets, just by using their minds.

Benson says this is something the rest of us can learn to do as well, through meditation.

New neuroscience research shows brain scans of people who meditate actually show less aging than people who don't.

BENSON (on camera): I would approach a patient.

GUPTA: Meditating, as Dr. Benson showed me, is something we can all learn to do.

(On camera): Choose a word or phrase you're comfortable with. I chose the word, gentle.

BENSON: Gentle. OK, let me show you how to do this.

GUPTA: Each time you exhale, repeat this word to yourself. Try not to think of anything else. After about three minutes, Dr. Benson observed my facial muscles were far more relaxed.

(Voice-over): Given 60 percent of all trips to the doctors are stress-related, Dr. Benson insists shutting off the mind like this helps the body revert to its innate healing state.

BENSON: We can effectively treat many forms of hypertension, anxiety, mild and moderate depression, insomnia, PMS, many aspects of infertility. They all can be affectively treated by a mind body component to our modern medicines when needed.

GUPTA: So yes, take medicines and see doctors. But the rest of the time, take care of your body and relax your mind.

ALIZADEH (on camera): We're realizing as doctors that not only can we control the body, in terms of the process of the bodies, where we can actually help our patients mentally to control the physical and physiological aspects of the body.

GUPTA (voice-over): Dr. Sanjay Gupta, CNN, reporting.

(END VIDEOTAPE) ANDERSON COOPER, CNN ANCHOR: Other people can't feel pain for different reasons. A little boy bangs his head against a door and floor, but won't cry out in pain. Even worse, he mutilates himself all because of a rare disorder. That's coming up.

And this little girl, not afraid of the dark, but afraid of the light. See how just a bit of it could hurt her so much, when "Medical Mysteries," a special edition of 360 continues.


COOPER: Tonight, in this special edition of 360, we're looking at medical mysteries, disorders and oddities that can stump doctors and researchers alike.

For instance, most of us probably consider sunlight to be exhilarating, life giving; dangerous or fatal only if overdone. Well, you're about to meet a little girl for whom seeing the light of day can cause unthinkable misery.

360 MD Sanjay Gupta unravels her "Medical Mystery."


GUPTA (voice-over): Kasey Knauff spends her days inside, looking out. It's only at night, once the sun goes down, that she can venture out beyond her living room window and do what other four-and-a-half- year-olds might normally do during the day.

UNIDENTIFIED FEMALE: Do you like to run?

GUPTA: Might take a walk. Even on cold nights, the family makes the most of it.

UNIDENTIFIED MALE: Whoa! Come on! You got it! There you go!

GUPTA: Mainly, they're just happy that she's there at all. When Kasey was born, she appeared fine. But her heart rate was up and other complications developed. Doctors couldn't figure it out. They put her under lights to keep her warm, but things got worse.

Less than 12-hours-old, worried doctors sent Kasey to a trauma center, where they put her under a stronger bilirubin lamp, the blue light commonly used for jaundice.

KURT KNAUFF, KASEY'S FATHER: She swelled like three times her size. She turned like red and then blue and she was like black and blue from head to toe. And nobody knew what was going on. It took about two and a half weeks and they came up with a diagnosis.

GUPTA: By that time, she had been burned all over her body. It turns out, her skin is ultra sensitive to light. Kasey suffers from CEP, one of the rarest forms of a rare genetic disorder called porphyria.

It has many manifestations and reddish purple urine, purple teeth and abdominal pain are all telltale signs. Kasey is one of less than 100 people in the United States with this particular kind of porphyria. Her demon is light, sunlight, fluorescent light, halogen light. Exposure to any ultraviolet light can burn her skin, creating blisters, scarring, infections and myriad of other painful complications.

KURT KNAUFF: It's made out of a ultraviolet protection material.

GUPTA: Her parents take every precaution to keep her safe. There are special UV filters on all of the windows in her house. They use incandescent light bulbs with no more than 50 watts. And a full- time nurse to help Kasey with her regimen.

Because her scars don't grow with her body, she's had numerous plastic surgeries. Broken bones, deformities, stomach problems -- all part of the territory. And lots and lots of doctors.

KURT KNAUFF: Hematologists, dermatology, plastic surgeons.



B. KNAUFF: Bone specialists.

KURT KNAUFF: Nobody's really a specialist in CEP, so to speak, but we'll take any advice from any of them, of course.

GUPTA: And Kasey takes it all in stride. Her 14-year-old sister Kylie, who does not have CEP, has made her own adjustments.

KYLIE KNAUFF, KASEY'S SISTER: I do a lot of stuff inside now. But whenever I was younger, I was always outside and doing stuff outside on the swing set and playing with my friends outside. Like, I can imagine that Kasey gets bored inside, but we found a lot of things to keep us busy.

KASEY KNAUFF: You know it's backwards.

GUPTA: But there are days when Kasey has to go out, like her monthly trip to the pediatrician, which requires serious preparation.

KURT KNAUFF: .05. That's a good day, a real good day for Kasey.

GUPTA: Outside, her dad checks the UV index chart. Inside, the nurse helps Kasey put on her special protective suit. And then, the rush to the van.

B. KNAUFF: All right, now let Daddy come and pick you up.

KURT KNAUFF: Can you stay covered for a second?


GUPTA: Once inside, she's protected by UV filters and a blackout curtain. Not your typical trip to the doctor. Even here, the lights are adjusted as Kasey gets her hemoglobin checked, along with her general health. Because besides coordinating with specialists, that's about all her pediatricians can do.

DR. DAVID COGGINS, KASEY'S PEDIATRICIAN: I need everybody to hold your hand. My goodness.

Her parents have been really very instrumental in helping me learn about it because they've done a lot of research and have been to a lot of different specialists.

GUPTA: The only known cure for CEP is a bone marrow or stem cell transplant, which is very risky. And they haven't yet found a match for Kasey.

In the meantime, they're hoping slow exposure to more light and possibly blood transfusions might help.

B. KNAUFF: If she does blood transfusions, she could relatively live a normal life. She would just have to every couple of weeks go to the doctors or a hospital, have the blood work done, then she would have a blood transfusion, and then she would be able to go outside, lead a normal life, and we would just have to monitor her hemoglobin level to make sure it's in a safe range.

GUPTA: But they say this year's been good. They went to the movies. Kasey went swimming, bowling, and to the library for the first time. All with the aid of people who helped with her very special needs.

Her parents say Kasey doesn't feel like she's missing out -- yet.

B. KNAUFF: Who knows, maybe in the future. Enzyme research is really big right now, so. By the time she grows up, she might actually have the cure. They can just inject the enzyme that she's lacking and she'd be able to lead a normal life.

KURT KNAUFF: Yes, we've always been optimistic that, you know, things are going to be all right. You know, everything -- just take it day by day.

GUPTA (on camera): There are actually eight different types of porphyria. Some may remember King George, III, also suffered from porphyria, causing his mental illness; and the movie, subsequently called, "The Madness of King George." It was all based on that porphyria.

As far as Kasey goes, she's doing quite well. Her family was able to find a specialist -- a CEP specialist in New York. She's also had meetings at school -- the goal, to get her back into school safely, without as much light.


COOPER: Thanks, Sanjay.

Another "Medical Mystery." This is what life looks like for one woman. The ordinary sights and sounds of life, magnified, overblown, overwhelming. Why? And what can be done? The answer is coming up.

Also, everyone told her she was stunning. But she couldn't see it. Now, she is addicted to plastic surgery. What does she see when looks at herself in the mirror? When this special edition of 360, "Medical Mysteries," continues.


ERICA HILL, CNN CORRESPONDENT: Hi everyone, I'm Erica Hill at "HEADLINE NEWS," We'll have more of "Medical Mysteries" in a moment for you.

First though, here's a look at some of the stories we're following tonight.

In the Philippines, hundreds of U.S. Marines have now joined the search for survivors, following Friday's mudslide. More than 1,000 people remain missing, including more than 200 schoolchildren and seven teachers, one of whom reportedly sent a text message that read, "We are alive. Dig us out."

There are no such mentions of hope in a Mexican mining town, where nearly 48 hours after an explosion rocks a mine, rescuers are still struggling to reach 65 trapped miners. Today, they managed to get into the mine through a ventilation shaft, but could only get about a third of the way to the trapped miners. The miners were equipped with oxygen tanks to last just six hours.

President Bush is taking bipartisan heat for a proposed deal which would give control of six American ports to a shipping company based in Dubai. Today, Republican Peter King, chairman of the House Homeland Security Committee, said the president should freeze the contract until a full investigation is conducted.

And this 62-year-old great-grandmother, now also a new mom. Thanks to in vitro fertilization. Janise Wulf gave birth to healthy baby boy, her 12th child. Wulf also has 20 grandchildren and three great-grandchildren.

A medical miracle, a special edition of 360 -- "Medical Mysteries," that is, continues for you in just a moment.


COOPER: Tonight, we've been looking at "Medical Mysteries," a series inspired, really, by the world's first face transplant. Her groundbreaking operation got us thinking about all the uncharted medical territory we rarely hear about. Diseases that are both baffling and for now, incurable. Sadly, that describes our next medical mystery.

It's a disorder long unrecognized in girls, many of whom suffered in silence. As CNN's Randi Kaye explains, the syndrome makes the ordinary details of life almost unbearable.

(BEGIN VIDEOTAPE) RANDI KAYE, CNN CORRESPONDENT (voice-over): Imagine if this is how the world looked to you.

KATRIN ANDBERG, HAS ASBERGER SYNDROME: It's so many over stimulated things, like the noise and the lights and the people and the colors. They all just kind of go haywire in my brain.

KAYE: High speed chaos, brain overdrive, inability to focus. This is how the world often looks to 22-year-old Katrin Andberg.

ANDBERG: Such a mess. It's kind of like fireworks in your brain. It's like chaos. I mean, it's just -- it's like I walk past something and it's just a blur.

KAYE: Katrin Andberg has Asberger Syndrome, a neurological disorder similar to autism that makes communication and interacting with others a challenge. When Katrin agreed to sit down and talk with me, she had only one request, that her dog, James, sit by her side to help keep her at ease.

Like many people with Asberger's, Katrin has a hard time looking people in the eye.

(On camera): So, how do you feel with me looking at you?

ANDBERG: If you're looking at me, it's OK, as long as I don't have to look back at you.

KAYE (voice-over): People with Asberger's don't like to be touched. Katrin hasn't hugged her parents since she was a little girl.

ANDBERG: We have...

UNIDENTIFIED MALE: We have a finger touch.

KAY ANDBERG, KATRIN'S MOM: ... finger touch. Or sometimes I can touch heads with her, but you know.

KAYE (voice-over): And what if you said something funny and I reached out and touched you.

ANDBERG: That would not be good. I mean, I wouldn't do anything about it, but just, I would go, everyone's like, you know...

KAYE: What does it make you feel like?

ANDBERG: It just makes my skin crawl.

KAYE (voice-over): Those with Asberger's are known to blurt out offensive comments at inappropriate times and have very specialized interests.

ANDBERG: Come on. Go outside. Go outside. Go outside.

KAYE: For Katrin, it's dogs.

ANDBERG: Come on, J.J.

KAYE: By age 6, her life revolved around dogs. Today, she has a successful dog training business.

ANDBERG: Now, do it as I say. She's got to learn. She's got to learn. Come on, it's OK, girly. There she goes. That's a girl.

KAYE: James is Katrin's service dog, the co-pilot of her life.

ANDBERG: I have really bad anxiety, which is partly due to the Asberger's. So I get really nervous in certain places, so he's kind of emotional support.

KAYE: When Katrin traveled to Japan, James went with her. And when her Asberger's kicks in out in public and she disassociates or shuts down, James gets her to the car -- something Katrin taught him to do. ANDBERG: We'd go to the car and get his treat. And then we just gradually put it with other cars and then moved it to a parking lot, until he could find the car. Now, I'm getting a new car, so I got to do this all over again.

KAYE: Asbe's, as those with Asberger's affectionately call themselves, tend to be highly intelligent. Katrin graduated sixth in her class. But school was torture for Katrin. The crowded classrooms were overwhelming, even the fluorescent lights.

ANDBERG: They flicker every 30 seconds. So, they make this little -- they flicker, so I see the flicker, and they make this high- pitched noise, so I hear the high-pitched noise.

KAYE: At her parents' urging, Katrin went away to college. She chose a school where she could live off campus with her dog. But change isn't easy for anyone with Asberger's.

ANDBERG: It was just so awful. I was overstressed, you know, I wasn't anything familiar. I had to learn all this new stuff. And I basically had a mental breakdown.

KAYE: Katrin dropped out after just eight months. Doctors diagnosed her as depressed, maybe even split personality. She had to be hospitalized, which turned out to be a blessing.

ANDBERG: Finally, somebody says, well, what about Asberger Syndrome? And it was like a light bulb went on. It was like, oh my God, that's what my entire life has been like.

DR. DANIEL ROSENN, PSYCHIATRIST: One of the problems in diagnosing Asberger's, is that there's so much variability in the way it can present.

KAYE: Psychiatrist Daniel Rosenn doesn't treat Katrin, but he has treated thousands of people diagnosed with Asberger's -- most of them male. The syndrome has only really begun to be diagnosed in females in the last five years.

ROSENN: I think that many of the female youngsters have learned relatively quickly in school, if they can, to be more quiet, to be more visual, to observe things more and not put themselves in the situations where their eccentricities stand out. They've learned to read more, to stay on the edges of crowds, to be on the periphery of the playground.

KAYE: When she was in school, Katrin took advance courses because they didn't have so many students, and always ate lunch alone with a book.

Today, Katrin has few friends. She prefers to be with her dogs and build her business. She enjoys living with her parents, and a house full of pets.

(On camera): Do you ever think about maybe one day moving out of your parents house?


KAYE: And getting a place of your own and maybe marrying or having kids?

ANDBERG: You know, if I find the right person, then that's fine, but I don't really have an ambition to do that. You know, it's not -- I've never been on a date and I'm 22 and I really don't have any ambition to go on a date.

KAYE (voice-over): This is home. The only place Katrin Andberg truly feels safe.

Randi Kaye, CNN, Foxborough, Massachusetts.


COOPER: Well, chances are, you get a good night's rest. But this teenager can't get up. Sometimes he sleeps for days. Coming up, a look at his battle against a rare disorder.

Plus, one woman's all-consuming addiction to plastic surgery. She's had 30 cosmetic procedures so far. That's what she looks like now. After spending $100,000, she says she wants even more work done. Doctors say it's linked to a disorder.

You're watching "Medical Mysteries," a special edition of 360.


COOPER: For many Americans, getting eight hours of shut eye is really only a dream. According to the National Sleep Foundation, more than 70 million people have insomnia. All they want to do is sleep.

All one teenager wants to do is wake up. But a rare disease often keeps him in bed for days, even weeks at a time.

CNN's Kareen Wynter has more, as we continue this special on "Medical Mysteries."


KAREEN WYNTER, CNN CORRESPONDENT (voice-over): He's only 15- years-old, but he's in a race against time. Eric (ph) Haller seizes every moment on the basketball court and at home with friends. Simple things other people take for granted are precious to Eric (ph). He knows it's just a matter of time before he loses control.

ERIC (ph) HALLER, SLEEPS FOR DAYS: I'm pretty freaked out about that.

WYNTER: Before he has to sleep again.

E. HALLER: It's pretty stressful. Sometimes, it's depressing.

WYNTER: This vibrant, outgoing teenager slips into an altered state, in which he sleeps, and sleeps, and sleeps, sometimes for up to 20 hours at a time, day after day, buried beneath a blanket, getting up only to use the bathroom or for a quick bite.

Eric's (ph) biggest fear was getting sick and missing Christmas, just like last year. And, this year, it happened again.

UNIDENTIFIED MALE: Do you remember the last time you woke up?

E. HALLER: No. I just want to sleep.

WYNTER: Most medical researchers have never heard of this rare disorder. It's called Kleine-Levin syndrome. And it's a mystery. No one yet has found the cause. It's marked by episodes of excessive sleep, combative and childlike behavior. Each episode can last for weeks, even months, with patients literally sleeping their lives away. Eric (ph) has missed school, holidays, a large part of his childhood.

Loerry Haller says her son usually falls into an episode twice a month. His sleeping spells can last a week or longer.

LOERRY HALLER, MOTHER: He's going through so much agony right now, and -- in this little hell right now that he's in.

WYNTER: Loerry's life is also on hold.

L. HALLER: Our life stops, because Eric's (ph) life changes drastically. He cries, and asks, mom, when am I going to be better?

WYNTER: It's 8:00 at night, day nine. Eric (ph) has slept 18 hours today. The next morning, he wakes up, briefly, to use the bathroom.

L. HALLER: This is day 10, so he has been sleeping for 10 days.

WYNTER: But Eric (ph) goes right back to bed. A few hours go by. Loerry is concerned. Watch what happens when she tries to wake him up in the middle of the afternoon.

L. HALLER: Aren't you hungry now? You haven't eaten in a long time. E. HALLER: No. Get out.

L. HALLER: Eric (ph), do you feel like maybe you're coming out of it?

E. HALLER: No. I just said get the (EXPLETIVE DELETED) out.

WYNTER: It wasn't always like this. Loerry says her son began to get sick in the sixth grade. She took him to specialists and psychologists, who invariably told her Eric (ph) was either depressed or on drugs, or even faking his condition. It took two frustrating years until one doctor finally reached a diagnosis, Dr. David Palton. He stumbled on the answer in a 20-year-old textbook.

DAVID PALTON, PSYCHOLOGIST: It talked about a case of a 17-year- old young lady who would go to sleep for -- for a couple of weeks at a time, and talked about her regression in personality. And then, you know, I knew that that was something close to what I was seeing in Eric (ph).

WYNTER (on camera): Kleine-Levin syndrome. Finally, the Hallers had a name for Eric's (ph) problem. There are only 500 documented cases worldwide, but this new knowledge was a mixed blessing.

PALTON: Both had a big sigh of relief. It was -- it was bittersweet. It was good and bad news, of course.

WYNTER (voice-over): Dr. Palton says there has been almost no research into KLS. No one has come up with a cure. Each case is different. If they're awakened, some patients might try to stay up in a confused, foggy state. But they quickly go back to sleep.

DR. EMMANUEL MIGNOT, STANFORD UNIVERSITY: There's actually even a few cases where people have died of suffocating from eating and overeating during these episodes.

WYNTER: Dr. Emmanuel doctor is a researcher at Stanford University's Sleep Disorder Clinic.

MIGNOT: We are finding that there's probably a genetic factor that's important in predisposing to Kleine-Levin syndrome.

WYNTER: Dr. Mignot says researchers are still far from a cure. Until then, patients like Eric (ph) Haller will live as much of their lives as they can, in those precious moments of reality, before they have to sleep again. Kareen Wynter, CNN, Placentia, California.


COOPER: Well, coming up, for a little boy, his trouble could be deadly. He'll never say ouch or cry out in pain. He can't protect himself from injury. The dark side of a world without pain. Next, on this special edition of 360.


HILL: Hi everyone, I'm Erica Hill, from "HEADLINE NEWS." Back to a special edition of 360, "Medical Mysteries," in just a moment.

But first, here's a look at some of the business stories making news this Monday evening.

No numbers. Markets were closed for the holiday. Plenty of words, though, on this President's Day. Mr. Bush out barnstorming the country in Milwaukee today, where he was selling his new energy policy, promising a technological breakthrough that he says will startle Americans and wean the country away from imported oil.

Some industry watchers raising the alarm today about Sony's upcoming PlayStation 3. Analysts at Merrill Lynch warn, the console may be late to market and it could be a money loser to boot. The cost of the parts, they say, could reach $900 a unit, meaning Sony would take a financial hit on every machine sold.

And whoever bought that winning Powerball ticket at a convenience store in Lincoln, Nebraska -- pretty rich. $365 million richer. All right, you might want to cut that in half after taxes, but hey, still not doing so bad. Whoever bought the ticket -- and we know someone did -- has yet to claim the prize. Maybe he or she doesn't need the money. They could pass it on to us.

That's it for us over here at "HEADLINE NEWS." I'm Erica Hill. More "Medical Mysteries," right after this.

COOPER: Over this hour we've been taking a closer look at medical mysteries and few are stranger than our next one. It's about a young boy who lives in a world without pain. And although it may sound harmless for the child and his family, the suffering is almost unbearable.

360 MD Sanjay Gupta reports. But first, we must warn you that some of the photographs you'll see are graphic.



DR. SANJAY GUPTA, CNN SENIOR MEDICAL CORRESPONDENT (voice over): For most 4-year-olds a bump on the head is followed by an "ouch" and a painful cry. Not so for Roberto Salazar, who is almost always smiling. Even as a newborn, Roberto never did cry, even when he was being given a shot or when he should have been hungry.

STINGLEY-SALAZAR: Eating is supposed to be this inborn thing that everyone wants to do that -- you know, that everyone knows how to do.

GUPTA: At 3 months, Roberto just wouldn't eat. His mother had to feed him with an eye dropper. At 8 months, he weighed only 12 pounds. A stomach tube was inserted to force calories into him and to keep him alive.

His family knew something was terribly wrong, but were shocked when he began teething. STINGLEY-SALAZAR: Roberto didn't like any teething kind of toys. It was always his hands. Hands in the mouth constantly. And then he would get his hands bleeding, he had big open sores on his hands.

GUPTA: And it wasn't only his hands. His horrified parents watched as Roberto began to mutilate his own tongue and his lips.

STINGLEY-SALAZAR: You've got to get in the car.

GUPTA: In desperation, Roberto's mother took him to see dozens of doctors. None had helpful answers.

Susan found Dr. Felicia Axelrod, a specialist in a very rare set of disorders.

DR. FELICIA AXELROD, NYU DYSAUTONOMIA CENTER: All of the children with HSAN live in a world without pain. The body wants to have input. The body needs sensation to come into it so that it can process, so it can develop, so the brain can be stimulated.

GUPTA: HSAN, or Hereditary and Sensory Autonomic Neuropathies, is a group of seven rare disorders. It affects the autonomic nervous system, a system regulating blood pressure, heart rate, sweating, and tearing in the eyes. At varying degrees, children with these diseases feel very little to no pain at all.

AXELROD: When one hears that a child lives in a world without pain, you would think that that is an idyllic world. But actually, pain is a very important function. It helps us protect ourselves from injury, to know when we should stop doing something.

STINGLEY-SALAZAR: More? You want more tickles?

GUPTA: Roberto can feel touch, even tickles on the tummy. But he does not feel pain.

He cannot sweat or regulate his own body temperature, making air- conditioning in the summer a matter of life or death.


GUPTA: Roberto's type is the most severe and rare type of HSAN. More than half its victims die by age 3. Ironically, the severe condition often is combined with hyperactivity. Roberto now takes Ritalin.

STINGLEY-SALAZAR: If you can imagine lacking the ability to feel pain and hyperactivity, it's the deadliest combination that you could put together, especially for a child.

UNIDENTIFIED FEMALE: You can't hit her unless she's in a car.

GUPTA: A broken foot, a fractured skull, leaping down entire flights of stairs, even choking. Roberto cannot feel his body telling him to stop.

STINGLEY-SALAZAR: Mom will hold the tube.

GUPTA: It is estimated that in order for him to feel pain the action has to be 100 times greater than the normal person's threshold. That is if he feels it at all.

STINGLEY-SALAZAR: When he does things, he does it with the intensity 100 times like we do it, because you don't get the input back.

GUPTA: Doctors say Roberto will be wheelchair-bound by the age of 10, a result of the wear and tear he does to his own body every day.

There are only 17 surviving children in the United States with this condition. No matter how severe, HSAN is a genetic disorder. Both parents carry the gene mutation. There's up to a 25 percent chance of developing it with each pregnancy.

There is no cure or treatment. Therapy deals with the symptoms, not stopping the disorder.

AXELROD: The most challenging and frustrating thing about this disorder is that you can't treat everybody the same way, and the other frustration is that we don't have a definitive therapy.

GUPTA: But there is some hope in the form of older HSAN kids. Like 15-year-old Perry Goldberger (ph). She has lived her entire life with familial dysautonomia, a less severe form of HSAN.

PERRY GOLDBERGER (ph), SUFFERS FROM FAMILIAL DYSAUTONOMIA: If you get hurt sometimes, my parents would say, where did you get that. And I was like, I don't know. But it's also like a bonus because then you don't have to feel pain and so it doesn't hurt.

This is my schedule, my daily schedule that I take every single time. You get used to it after a while.

GUPTA: For young HSAN patients, these are hard, but vital lessons to learn.

STINGLEY-SALAZAR: He isn't ever going to learn to feel pain. But he can learn what not to do, not to get into that situation of pain. And it's hard.

GUPTA: For kids like Perry (ph) and Roberto, it's going to be a lifelong struggle, but it is possible to live a happy, albeit pain- free life.

Dr. Sanjay Gupta, CNN, Atlanta.


COOPER: Next, obsessed with beauty. A woman addicted to plastic surgery. She's had 30 procedures and she's just 29. That's how she looked before. That's how she looks now. Doctors say it is linked to a disorder. We'll look at that when this special edition of 360, "Medical Mysteries" continues.


COOPER: Welcome back to "Medical Mysteries," a special edition of 360.

The search for the perfect face isn't just expensive. It can often be addictive. According to the American Society for Aesthetic Plastic Surgery, almost 12 million Americans underwent a cosmetic procedure in 2004. And for some patients, one is never enough. You're about to meet a woman. Her name is Jenny Lee. And as you'll see, she went to extremes to reshape her image. And doctors say it could be linked to a disorder.

Here's CNN's Paula Zahn.


JENNY LEE (voice-over): I wanted to look in the mirror and say today, you look OK. Not great, not fantastic, not beautiful, not gorgeous, nothing like that. I just wanted to be OK. That's all I wanted.

PAULA ZAHN, CNN CORRESPONDENT (voice-over): It's hard to believe that this beautiful young woman ever could have felt that way.

Jenny Lee Burton was so striking as a teenager, that her family and friends told her she looked like Julia Roberts.

This is Jenny Lee Burton today. She bares little resemblance to the girl in the picture. At 29, Jenny has had 30 cosmetic procedures.

(On camera): So, Jenny, I have seen pictures of you before you ever had your first surgical procedure, and you were stunning.

JENNY LEE: Thanks.

ZAHN: What do you think you looked like back then?

JENNY LEE: I thought I was a really pretty girl. I had more boys chasing at me than I could shake a stick at.

ZAHN (voice-over): Jenny began a relationship with a young man who she eventually married. She says he picked apart her physical features and caused her to question her self worth. As the relationship progressed, Jenny lost more and more confidence in her appearance.

At the age of 19, instead of changing the relationship, Jenny decided to change herself. She went to a plastic surgeon.

What was the first thing you had done?

JENNY LEE (on camera): The first thing that I did was my breasts. I went in and had a breast augmentation because I felt like of all of the things that I have been criticized, that was the thing that I felt I could benefit the most from.

ZAHN: And then did you like what you saw in the mirror?

JENNY LEE: I liked my breasts. I did my nose at the same time. I did full body liposuction at the same time. I was fairly happy there for a little while.

ZAHN (voice-over): But after that first experience with the magic of plastic surgery, Jenny Lee felt she could look even better. She took her daughter and left her husband behind, but not the plastic surgeon.

There were cheek implants, two different kinds of lip implants, new teeth, botox injections, and two more nose jobs to narrow and straighten her nose.

ZAHN (on camera): But, in having these three nose jobs, you really did destroy your nose?

JENNY LEE: Well, I can't blow my nose like a normal person. I can't breath very well out of it.

ZAHN (voice-over): Trying to make ends meet as a single mom and to support her growing dependence on surgery, Jenny took weekend jobs as a waitress. She lived on peanut butter sandwiches.

Ironically, she met and married another man, who felt she was perfect just the way she was. But that unconditional love wasn't enough. Jenny decided on her most serious procedure yet -- a brow lift. An invasive surgery in which she would be cut literally from ear to ear. The muscles that cause furrows and lines in the brow are removed -- or altered, to raise the eyebrows, erasing any lines.

(On camera): But that's a procedure that a lot of women put off until they're in their 50s and 60s. You did that when you were 25 years old.

JENNY LEE: I call that preventative maintenance.

ZAHN: Very early preventative maintenance.


ZAHN: And you never had any sense of self-consciousness about what the heck am I doing? I'm in my 20s. I haven't even aged yet and I'm doing this.

JENNY LEE: You know, I did after I came out of surgery and I realized that I had just been sliced from ear to ear. Because I was real casual about it. I said, oh it sounds great, go ahead with it. I didn't ask exactly what this entailed.

And when I woke up, my husband just went (gasp), you know, and it looked like I had been in a massive car wreck because I had black eyes and I had a split on my nose and my lips were like, you know, huge because, you know, they were swollen. My whole face was swollen. But, you know, I look back at it now and think it was one of the greatest things that I did. I'm glad I did it at 25 years old.

ZAHN (voice-over): But Jenny finally discovered that her burning need to change her appearance was far more than just a preoccupation. She says she was diagnosed with body dysmorphic disorder, or BDD, a form of obsessive compulsive disorder.

Patients like Jenny literally become obsessed with minor physical flaws.

JENNY LEE (voice-over): I can tell you that when I look at pictures, it's like I'm looking at someone else. Because I'll go, wow, that's a really pretty girl.

(On camera): You know, I find all of the positive things about it. The problem that I have, is when I'm looking in the mirror. And it's just me and the mirror. And I don't se the same things that the camera gives back to me.

ZAHN: Jenny says that she's learned some techniques from her psychiatrist to help change her thinking about her appearance.

But performing plastic surgery on patients like Jenny is causing some doctors to be very concerned.

DR. ALAN GOLD, PLASTIC SURGEON: So, for a 29-year-old who has had so many of those procedures, unfortunately who may be looking over-operated upon, I think it's irresponsible on the part of a surgeon or surgeons not to have stopped her at some point and have looked to what the deeper problem might be in all of this.

ZAHN: Dr. Alan Gold is a plastic surgeon and associate professor of surgery at the Weill Medical College of Cornell University.

GOLD: If we would decide that a patient was suspect for having something like a body dysmorphic disorder, it would be absolutely unconscionable to operate on that patient. And that's a patient that should be turned down.

ZAHN: The retail price of Jenny's new face and body comes with a staggering price tag -- so far, about $100,000. And it's no wonder, over the last 10 years she's had 30 procedures. Here's the complete list: She's had cheek implants, two kinds of lip implants, veneers, botox, three nose jobs, a brow lift, steroid injections, lip enhancements, two breast augmentations, three breast lifts, full body liposuction -- including arms, stomach, abs, legs and knees. And even though her husband insists that she stop, as incredible as it seems, Jenny still wants more.

(On camera): Do you think there'll ever be a time when you're actually going to accept the way you look and like how you look?

JENNY LEE: There may be a time like that, but I don't think it'll be anytime in the next 20-30 years.

ZAHN: Where does this need to continually change yourself come from? JENNY LEE: It's a battle with me and my reflection. I'm very secure in who I am. I know who I am as a person, what kind of person I am. But, this battle with my reflection and my appearance is steady and it won't go away.


COOPER: Thanks for watching this special edition of 360. I'm Anderson Cooper.


CNN TV E-mail Services CNN Mobile CNNAvantGo Ad Info About Us Preferences
© 2007 Cable News Network LP, LLLP.
A Time Warner Company. All Rights Reserved.
Terms under which this service is provided to you.
Read our privacy guidelines. Contact us. Site Map.
Offsite Icon External sites open in new window; not endorsed by
Pipeline Icon Pay service with live and archived video. Learn more
Radio News Icon Download audio news  |  RSS Feed Add RSS headlines