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In the Media

article imageNicole Delien, 17, with 'Sleeping Beauty Syndrome' slept 64 days

article:337277:11::0
By JohnThomas Didymus
Nov 19, 2012 in Health
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Nicole Delien, 17, of North Fayette, Pennsylvania, slept for 64 days from Thanksgiving to January, her longest sleeping episode ever. She suffers a rare sleep disorder called Kleine-Levin Syndrome or informally, "Sleeping Beauty Syndrome."
According to ABC News, Kleine-Levin Syndrome is characterized by "recurring but reversible periods of excessive sleep... accompanied by childlike behavior."
The Daily Mail reports that during bouts of sleeping caused by her disorder, Delien wakes up only very briefly, in a confused semi-conscious, sleepwalking state to go to the bathroom and have a meal. She falls back asleep immediately after and may sleep continuously for 18 to 19 hours.
According to CBS Pittsburgh, Nicole's mother, Vicki, says that when her daughter wakes up to a sleepwalking state, she does not remember what happened later.
The Daily Mail reports that Delien's family appeared on Jeff Probst's talk show recently to raise awareness about the condition.
According to Vicki Delien, it took several frustrating hospital visits to get a diagnosis for her daughter. A doctor at the Allegheny General Hospital in Pittsburgh, Pennsylvania, finally made a diagnosis of the disorder, prescribed medications and offered suggestions on how to manage it, CBS Pittsburgh reports.
The Kleine-Levin Syndrome Foundation (KLSF) explains that people affected with "Sleeping Beauty Syndrome" may go for a "period of weeks, months or even years without experiencing any symptoms, and then they reappear with little warning." The Huffington Post reports that "when a typical episode of Sleeping Beauty Syndrome begins, the patient becomes progressively drowsy and sleeps for most of the day and night, waking only to eat or go to the bathroom." According to the KLSF wesbsite, "When awake, the patient’s whole demeanor is changed, often appearing 'spacey' or childlike. When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy)."
Oxford Journal reports the symptoms, in addition to excessive sleeping, "include disorientation , hallucination, child-like behavioral, binge-eating and periods of hypersexuality when awake."
The National Institute of Neurological Disorders and Stroke, says symptoms "include excessive food intake, especially 'junk food,' plus irritability, childishness, disorientation and hallucinations."
Doctors know only very little about what causes the disorder but suspect it may be caused by malfunction of the hypothalamus and the thalamus, parts of the brain that control appetite, sleep and sexuality.
KLSF says more than 70 percent of people who suffer the condition are male. Only about 1,000 children and young adults are affected worldwide.
According to the Oxford Journal, the condition affects young male adolescents mostly.
ABC News reports that Eric Haller, a 21-year-old from Placentia, California, who is also affected by the condition, says he suffers bouts of affliction about eight to ten times a year. During such bouts, he falls into a dreamlike state and he is unable to do simple mental tasks such as reading, adding up numbers or following his favorite TV shows.
A single episode of the illness may last more than 30 days. Haller said: "When I go through it, it's complete hell for me. It doesn't feel real and it's hard to understand what people are saying. It's so frustrating, because I want to understand."
Haller said that in between episodes, he is perfectly normal but his memories of the last episode are hazy.
His mother Lori Haller-Schiller, said: "Normally, Eric is a loud mouth, a sport-loving guy. I never know when it will come on. It's like a light switch and he turns into a child. He likes sleeping and is very crabby and doesn't like to talk."
Lori said he also suffers fast-food cravings during episodes: "Every day I go to Chick-fil-A and order a meal for three people. It's so weird, and the Gummy Worms.… He doesn't eat like that normally."
Nicole told CBS Pittsburgh that the medication helps to space out her sleeping episodes and makes them less frequent. She said she missed Thanksgiving, Christmas and birthdays and even family trips to the Disney World because of the condition.
She also missed out on an opportunity to meet pop singer Katy Perry. But when Perry learned about Nicole’s disorder, she arranged to meet her backstage at a performance in Connecticut.
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