Kleine Levin Syndrome featured on CNN

December 29, 2005, CNN

Kleine Levin Syndrome (KLS) was featured on the nationally televised CNN show “Paula Zahn Now” and on CNN Headline News on December 29, 2005.  The segment featured Eric, a very brave 15 year old, as he struggles with KLS.  In addition, the segment featured Dr. Mignot fromStanford University who stated that he is interested in researching possible genetic factors associated with KLS.  He further said that more research is needed to determine a definite cause for Kleine-Levin Syndrome.

Kleine Levin Syndrome (KLS) was featured on the nationally televised CNN show “Paula Zahn Now” and on CNN Headline News on December 29, 2005.  The segment featured Eric, a very brave 15 year old, as he struggles with KLS.  In addition, the segment featured Dr. Mignot fromStanford University who stated that he is interested in researching possible genetic factors associated with KLS.  He further said that more research is needed to determine a definite cause for Kleine-Levin Syndrome.

Here is a transcript of that show.

TRANSCRIPT OF PAULA ZAHN SHOW, DECEMBER 2005

COLLINS: Tonight, after a long day of running around and getting things done, we are all looking forward to a good night’s sleep. In fact, most of us just can’t get enough of it. Three-quarters of us have trouble sleeping, according to the National Sleep Foundation.

But you’re about to meet a teenager whose life is a nonstop battle against sleep.

Here’s Kareen Wynter now, looking into one of the mysteries of the mind.

(BEGIN VIDEOTAPE)

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.

UNIDENTIFIED MALE: I’m pretty freaked out about that.

WYNTER: Before he has to sleep again.

UNIDENTIFIED MALE: 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?

UNIDENTIFIED MALE: 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.

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.

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.

HALLER: Aren’t you hungry now? You haven’t eaten in a long time.

UNIDENTIFIED MALE: No. Get out.

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

UNIDENTIFIED MALE: 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.

(END VIDEOTAPE)

COLLINS: And one more thing. Kleine-Levin syndrome first appears during adolescence, and mostly in boys.

Written by KLS Foundation

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