The real Sleeping Beauty
Many parents of teens can tell you tales of fifteen hour stretches of sleeping, ravenous eating and dramatic mood swings, but a rare disorder takes these typically-teen behaviors to an extreme.
Kleine-Levin Syndrome (KLS), also known at Sleeping Beauty Syndrome, is a neurological disorder that causes sufferers to alternate between being completely healthy and being a completely different person. Only about 1,000 people are affected by the disorder worldwide, but the symptoms of KLS make it a fascinating phenomenon, especially for parents.
Teen or toddler?
Imagine if your teenager suddenly starts babbling like a baby and throwing tantrums like a two-year-old, or sleeps for days and then wakes in a dream-like trance that doesn't seem to end. It may sound like science fiction, but that's reality for those who suffer from KLS. Other symptoms include aggressive behavior, irrational fears, confusion, hallucinations and crying. Sufferers may not have any memory of their life during an "episode," which can make relationships and education difficult.
Alanna Wong, who was recently profiled by TheBlaze.com, was diagnosed with KLS when she was seventeen, although she began experiencing symptoms when she was just 10 years old. She started an online support group, KLS Life, in an effort to shed light on the disorder and encourage sufferers and their caregivers.
"Because of the nature of Kleine-Levin Syndrome, many patients can feel isolated and misunderstood," Wong states on her site. "By sharing my story and experiences, I hope to clarify some misunderstandings as well as reach out to people who are struggling with the illness in their own life."
Wong's episodes leave her clinging to a stuffed animal, throwing things and screaming at her parents. "It's like I'm in a nightmare state twenty-four-seven," she says in a BBC Documentary on KLS, Strange Brain. "I'm always frightened and scared. It's like you're living in hell."
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KLS can be misdiagnosed as a psychological illness in part because of the highly emotional symptoms associated with the disorder. "[I]t is periodic and…people are completely normal [in between] episodes," Emmanuel Mignot, M.D., PhD, a renowned KLS researcher tells Scope, a publication of Stanford University's School of Medicine. "It is a bit like Dr. Jekyll and Mr. Hyde. Further, the symptoms are fascinating. Many other disorders like depression or bipolar are like this, and there is a feeling we should be able to reverse it for good. It could be a model for understanding these other conditions."
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Right now, nobody knows for sure what causes KLS, making a cure difficult to develop. On top of that, each sufferer has his own unique episode triggers (including alcohol, stress, injury and sunburn), which only adds to the mystery of the disorder. Stanford University's Center for Narcolepsy is currently conducting a study of KLS to help determine possible causes and treatments.
Watch a video of Alanna Wong experiencing a KLS episode.