Beth Goodier is living a nightmare. Her mother, Janine, estimates that Beth has been asleep for 75 percent of the past five years — sometimes for as long as six months at a stretch. As a result, Beth has had to drop out of college and can’t keep a job. But her current state isn’t due to laziness or a lack of motivation. Instead, The Daily Mail reports, she’s diagnosed with a very rare illness formally known as Kleine-Levin Syndrome.
According to The Kleine-Levin Syndrome Foundation, the disorder is marked by excessive sleep, behavioral changes, and a loss of understanding about the world. When the illness strikes — the onset usually happens during adolescence — the person suffering has no choice but to stop all daily activities, because KLS can put a person to sleep for days, weeks, or sometimes even months at a time. And, The Kleine-Levin Syndrome Foundation explains, sufferers aren’t able to care for themselves during this time.
For Beth Goodier, who’s been documenting her journey on Facebook, the disorder means that she won’t be able to finish college or chase her dreams of being a child therapist until her symptoms resolve. It also means that she has to catch up with friends and try to cram in as much as she can every time she’s awake (while always dreading another episode).
From The Daily Mail:
At the moment, Beth is two-and-a half months into another deep sleep episode. Nothing — not drugs, loud noises, pleading or cajoling — will wake her.
So her life is spent in pyjamas in bed or asleep on the sofa. On the rare occasions she leaves her home in Stockport, Cheshire, to see a doctor, she must be pushed in a wheelchair because she is too tired to walk.
All Janine can do is sit and wait desperately for the ‘on’ switch to flick back in her daughter’s head.
‘It is like night and day,’ says Janine, 48. ‘She might wake up tomorrow and then it’s a race against time to live the life she should have had. She rushes off to catch up with her friends and get her hair done. But no one knows when she might fall asleep again.’
What caused the condition? According to experts, the disorder may be caused by inflammation in the brain that’s set off by an infection. That inflammation — if one is genetically predisposed — may damage the parts of the brain that control sleep, making it impossible to stay awake. And unlike in the movies, when the sufferer does wake up they’re not ready to ride off into the sunset; they’re irritated, confused, and upset.
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And there’s more. According to Janine Goodier — who The Daily Mail reports has had to quit her job to take care of her daughter — the worst thing is the panic Beth feels upon waking:
‘The most horrible symptom is her confusion,’ says Janine. ‘When she wakes for a few hours a day, she does not know where she is and becomes very agitated.
‘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.’
Beth Goodier isn’t alone. She’s one of more than 100 people diagnosed with the disorder in Britain. But while KLS is slowly becoming better understood and more widely accepted, there’s still nothing that anyone can do to stop it from occurring, nor is it immediately possible to prevent the possible depression and anxiety that can occur when sufferers realize that, as one expert who spoke to The Daily Mail put it, “their lives are slipping away.”
You can learn more about the syndrome here and read more stories of people who are living with KLS here.
(H/T: Cosmopolitan)
