Thursday, December 9, 2010

Teenager who sleeps for 10 days, Kleine-Levin Syndrome?

Trying to wake Louisa during one of her episodes is difficult, while most teenagers struggle to get out of bed in a morning, Louisa Ball might take 10 days to fully wake from her slumber, due to a very rare neurological disorder. So what's it like living with Kleine-Levin Syndrome?
Louisa has slept through holidays, friends' birthdays and half of her GCSEs. In 2008, aged 14, she had been suffering from flu-like symptoms. She was at her school in Sussex when she started nodding off in class and behaving strangely. "I didn't know what I was doing, what I was saying, everyone thought 'hey this isn't right,'" she recalls. "I was hallucinating and after that I don't remember anything. All of a sudden it just went blank and I just slept for 10 days. I woke up and I was fine again."
Her parents Rick and Lottie watched their daughter becoming fidgety and with unusual facial expressions as she sank into sleep. The first time was a frightening experience for them, although Louisa herself says she wasn't scared by the episode, more puzzled. "It was really weird, no one knew what was wrong, we just thought it wasn't going to happen again. And then four weeks later it happened again." She was finally diagnosed with Kleine-Levin Syndrome (KLS). There is no known cause or cure but Louisa says it was good to know what it was and that it wasn't life threatening.

Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. 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). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported.
Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake. Not everyone affected by KLS exhibits all of the symptoms described above.
Affected individuals may go for a period of weeks, months or even years without experiencing any symptoms, and then they reappear with little warning. In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However they function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the adolescent’s life and family. KLS robs children and young adults of big pieces of their lives, one agonizing episode at a time.
The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families. The cause of Kleine-Levin Syndrome is not known.


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