17-Year-Old With Rare 'Sleeping Beauty' Syndrome Wishes She Could Wake Up
As someone who's spent most of my life dozing off in inappropriate places (like high school chemistry class and crazy loud action movies and the occasional dentist's chairs), I've always sort of half-joked, half-wondered about being narcoleptic. Of course I'm not actually narcoleptic, but being mildly sleepy all the time stinks, so I can't even begin to think how difficult things must be for 17-year-old Nicole Delien: The Pennsylvania teen suffers from Kleine-Levin Syndrome, otherwise known as "Sleeping Beauty Syndrome," an incredibly rare condition that forces her to sleep 18 to 19 hours a day, sometimes for 34 to 62 days in a row. Nicole once fell asleep before Thanksgiving and didn't wake up until January! Can you imagine watching your seemingly healthy child sleep through the entire holiday season?!
Because when she's not having one of her "episodes," Nicole's mom Vicki Delien says: “She's just a normal kid. She's a very happy, bubbly teenage girl who enjoys everything and tries to be happy. When she goes into an episode, it just tears everything apart."
Doesn't it break your heart? And there's no cure for Kleine-Levin Syndrome, either (though some medications, including stimulants, can help to keep episodes at bay). But the worst part must have been the 25 months Nicole suffered with Kleine-Levin before doctors figured out what was going on. Only about 1,000 people have the disorder, so it's still hard to diagnose -- Nicole was told she had either epilepsy or West Nile Virus.
At least she knows the truth, finally, and doctors hope she will eventually grow out of her worst symptoms. For now, though, Nicole is pretty tired of being tired.
"She's 17 now and it really upsets her. She's missed out on a lot," says Vicki. Awww. Well, one thing's for sure -- if and when Nicole gets better, she's definitely going to live her life to the fullest!
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