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Entries in Kleine-Levin Syndrome (2)

Monday
Feb272012

Kleine-Levin Syndrome Turns Young Adults into Babbling Babies

Eric Haller (L) poses with his family. Eric Haller(PLACENTIA, Calif.) -- When Eric Haller gets sick and goes into an "episode" -- about eight to 10 times a year -- he slips into a dreamlike state and is unable to do simple cognitive tasks, such as reading, adding or comprehending his favorite TV shows.

The 21-year-old from Placentia, Calif., has a 3.5 average at Fullerton State University and interns for the L.A. Clippers, but his capabilities disappear when he descends into a trance.

Haller has Kleine-Levin Syndrome, a rare sleep disorder that is characterized by recurring, but reversible periods of excessive sleep, sometimes up to 20 hours per day accompanied by childlike behavior.

Just last week, he came out of an episode that lasted 30 days.  The one before that was 37 days.

"When I go through it, it's complete hell for me," said Haller.  "It doesn't feel real and it's hard to understand what people are saying.  It's so frustrating, because I want to understand."

Symptoms include excessive food intake, especially "junk food," plus "irritability, childishness, disorientation and hallucinations," according to the National Institute of Neurological Disorders and Stroke.

More than 70 percent of those who have KLS are male, and it affects only about 1,000 children and young adults worldwide.

Doctors know little about the disorder, but suspect it may be related to a malfunction of the hypothalamus and thalamus, parts of the brain that control appetite, sleep and sexuality.

The disease is typically diagnosed around age 11 and episodes eventually decrease in frequency and intensity over the course of eight to 12 years.

The hardest part is psychological for both KLS patients and their caregivers, who report feeling the stress of this capricious condition.  Sometimes, patients babble like babies, barely incomprehensible -- and others can act out sexually.

Copyright 2012 ABC News Radio

Thursday
Jul142011

Rare Syndrome Turns British Woman Into 'Sleeping Beauty'

BananaStock/Thinkstock(WORTHING, England) -- In the fairy tale, Sleeping Beauty is a princess sent into a 100-year slumber by an evil witch. A kiss from a handsome prince breaks the spell, and they live happily ever after.

The present-day "Sleeping Beauty," as the media calls her, is a 17-year-old woman in Worthing, England, named Louisa Ball. Instead of the fairy tale's poisoned splinter, her curse began with flu-like symptoms two years ago.  Then, she began to sleep.

She wouldn't stop for 10 to 14 days. Her parents would rouse her for bathroom breaks and ravenous feedings.

Her mother, Lottie Ball, asked to see a dietician, concerned that Louisa was not getting all her nutrients when in an episode. The advice she got was to give Louisa smoothies, which gave her food and fluid at the same time.

Even so, Louisa would lose as much as 10 pounds during a sleep episode. Even odder than her eating habits was her behavior, which featured offensive, almost primal, mood swings.

The parents knew a sleep episode was coming when their otherwise sweet-natured daughter would snap at others inappropriately.

The year before college, Louisa slept for a solid week every month. She missed weeks of school and fell behind in her beloved dance classes.

"I missed my end-of-school exams, obviously, because I was in an episode," she said. "I've missed, like, family holidays, birthdays and parties."

The doctors were as baffled as Louisa's parents. Then came a breakthrough, courtesy of a consultant in London to whom the family was referred.

Louisa was diagnosed with Kleine-Levin Syndrome, an incurable autoimmune disorder that some researchers say disrupts the hypothalamus, the part of the brain that regulates appetite, sleep and libido.

KLS more often afflicts males, usually beginning with a virus during adolescence that seems to trigger the sleep and aggressiveness, along with hypersexuality. Mood stabilizers like lithium and hormone therapies help those with KLS around the edges, but they don't ward off the extreme sleep.

Louisa, who feels "refreshed" when she awakes, says her sleep episodes have become less frequent. She recently went five months without one. According to experts, KLS sufferers can grow out of it after 10 to 12 years.

As Louisa's story grew in the media, headlines called her "Sleeping Beauty," and KLS is known as Sleeping Beauty syndrome. If someone cast a spell on Louisa, there must be a handsome prince coming in some form. Romantically speaking, she said there was no prince in her life, at the moment.

The prince could take the form of a cure, and Louisa's family contributes to the KSL Foundation in California to help speed his arrival.

In either case, Lottie Ball said, "We're waiting for the handsome prince."

Copyright 2011 ABC News Radio







ABC News Radio