Queen of Sleep

Living with narcolepsy: a personal journey

Louisa sleeps for 10 days – Kleine-Levin Syndrome

with 3 comments


KLS is the opposite of Insomnia


The teenager who sleeps for 10 days is an article published by BBC News on the 8th of December 2010. Louisa Ball is a teenager diagnosed with Kleine-Levin Syndrome. Media call her the real life sleeping beauty. She is not sleeping beauty because she was supposed to sleep for  100 -150 years? But she is a beautiful teenager who is passionate about dance.

Kleine-Levin syndrome is yet another sleeping disorder which is yet another underdiagnosed/misdiagnosed rare disease. I have never slept for 10days straight, just 7days once when I had the flu. I vaguely remember changing my t-shirt and drinking water. When I woke up properly I was weak but got better quickly. It must be very irritating to live with KLS especially if you have something planned. Can you plan? On the brighter side, the condition seems to disappear after 10-15 years. There is no test for the condition so it might take 4 years to get a diagnosis on a process of elimination of other disorders.

What is Kleine-Levin Syndrome?

KLS is a disease of adolescence, and sometimes will begin after infection or illness, says Tom Rico of the Center for Narcolepsy & KLS Research at Stanford University, California. One theory behind the cause of narcolepsy is that it develops if you have had strep of the throat as a child/teenager that was severe enough to be diagnosed by a GP. I don’t remember if I did or not but I suffered from repetitive ear infections or as they are also called glue-ear until I was 15. I probably had 5-7 operations where a doctor would insert a plastic pearl or similar object into my ear so to drain the ear and help it heal again. And because of the relationship of ear-nose-throat perhaps the theory could extend from throat to ear and nose too? Back to KLS…

“An individual with KLS will have sleep episodes, typically lasting between one and three weeks, with coinciding cognitive disturbance in the few hours of wakefulness. “During this time period, a patient will sleep anywhere between 16 to 22 hours a day, every day, until the conclusion of the episode.” But the excessive sleeping is only half the problem, he says, because when awake during the episode, patients experience what they describe as a “dream-like state”. People with KLS don’t dream!!!! How unusual and strange for me! They are the opposite of narcoleptics who dream all the time.

Louisa is participating in a BBC documentary called The Real Sleeping Beauty, airing tomorrow at 9pm on BBC3. You can also view the program on BBC Iplayer if you live in the UK. I hope it is an accurate portrayal of KLS i.e. not driven by sensationalism. We’ve already seen to many documentary comedies on sleep disorders. I don’t have a TV but I hope to catch the show online, later, so I can watch it in my own time.

Louisa was also featured in February 2010 on Showbiz Gossip in The Kleine Levin Syndrome a.k.a Sleeping Beauty Sickness


Written by Queen of Sleep

December 8, 2010 at 4:37 pm

3 Responses

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  1. Watching it now – googled “Louisa sleep” and arrived on your site. It appears to be quite a good portrayal of what happens with KLS. Very interesting.


    December 9, 2010 at 9:35 pm

  2. Louisa sleeps for 10 days – Kleine-Levin Syndrome « Queen of Sleep ……

    Here at World Spinner we are debating the same thing……

    World Spinner

    December 10, 2010 at 12:55 pm

  3. Good Post!

    Online Casino

    December 23, 2010 at 12:34 pm

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