Sleeping beauty: Slumbering 22-year-old spends years unconscious

Most children hear the story "Sleeping Beauty" at some point, the tale of a sleeping princess under a witch's spell. She can't wake up until a prince kisses her, and minus the prince's kiss Beth Goodier's story might remind you of the old fairy tale...  

The 22-year-old from Stockport, England suffered for five years from "Sleeping Beauty Syndrome" which is known in the medical community as Kleine-Levin syndrome

For Beth it began when she was 16. One day she fell asleep and couldn't wake up for the next 22 hours. In the days and weeks that followed she had continuous bouts of extreme tiredness. Her exasperated mother Janine would try to wake her but simply couldn't. Beth would sometimes seem to wake up, enough to string together a few incoherent sentences in a child-like voice, but then she'd fall back into the deepest of sleeps.

Janine, fearing the worst, decided to get Beth checked for a brain tumor. 

At the hospital, though, doctors arrived at a different diagnosis: KLS. Only one in a million people are affected by this syndrome, which causes sufferers to fall asleep almost continually for periods of over a week at a time. And it's impossible to wake them during these phases: not with loud noises or shaking them, nothing breaks the spell. 

Shortly before the episodes of sleeping started, Beth had tonsillitis. She recovered but her doctors pointed to this as a potential trigger for the outbreak of KLS. In almost all known cases of the syndrome, it's preceded by some 'triggering' event, though they also believe that some people may have a predisposition toward brain inflammations: KLS may result from damage to the thalamus and hypothalamus, parts of the brain responsible for sensory impressions and sleeping behavior.

 

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Since her first episode Beth has had more sleeping phases than wakeful ones. A full 75% of her life is spent unconscious. The young woman is tragically sleeping away the better part of her youth. She sleepwalks frequently as well and the few hours she is awake — during a sleeping phase — are more like a trance than being fully awake and include hallucinations that sound quite scary for both mother and daughter (you can see a short interview with Beth where she describes it here).  

Beth used to be a confident, extroverted girl, dreaming about going to university to study child psychology. But since becoming one of only 100 people in the entire UK struck with this illness, her career goals have had to be modified. She's already had to drop out of college numerous times due to being too sick and she suffers from anorexia related to the difficulty of regular and healthy eating through sleep phases.

 

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Many KLS patients also suffer psychologically as neurologist Dr. Guy Leschziner explains: "They feel as if they are in a dream-like state very separate from the world around them. It has a massive impact on their lives. When they wake up and realize what they've missed, they may be depressed and anxious. While it's not terminal, young people with KLS can see their lives slipping away in their most formative and important years."

Janine aches for her daughter too. "The toughest year was when her friends finished their A-levels and went off to university, because Beth knew when she woke up that it should have been her, and that hurt her badly. And when she hurts, I hurt," she said.

 

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While Beth is condemned to spend most of this period of her life in pyjamas, her boyfriend, whom she got to know in a wakeful phase several years ago, sticks by her and visits nearly every day. Dan, 25 and now an elementary school teacher, is waiting patiently until Beth's KLS is a thing of the past. Most of those affected have their first episode in their teen years and suffer off and on for the better part of a decade.

Her mother appreciates how "he will come round and sit with her nearly every day, talk to her and wait for the girl he fell in love with to come back."

 

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Beth has learned to enjoy the times when she's awake as much as possible, which seems like such a wise way to deal with her situation. We can only wish her a speedy end to this incredibly difficult illness — and a return to the normal, healthy life she so badly wants!

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