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17-Year-Old With Rare 'Sleeping Beauty' Syndrome Wishes She Could Wake Up
November 20, 2012 at 11:29 AM

17-Year-Old With Rare 'Sleeping Beauty' Syndrome Wishes She Could Wake Up

Posted by Jacqueline Burt on November 19, 2012 at 2:04 PM

nicole delienAs 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!

Click HERE to see video.

Can you imagine having a child with Sleeping Beauty Syndrome?

Replies

  • SlapItHigh
    November 20, 2012 at 11:47 AM

    Must be hard :(. I've never heard of that.

  • Janet
    by Janet
    November 20, 2012 at 12:07 PM

     I think I saw that on Mystery Diagnoses.

  • la_bella_vita
    November 20, 2012 at 1:22 PM

     I've heard of this. Very, very, sad. I couldn't imagine...

  • Pammi86
    by Pammi86
    November 20, 2012 at 1:24 PM

    Thats so terrible! It must be hard to have a normal life and goals when she never knows when she will fall asleep.

  • delanna6two
    November 20, 2012 at 1:38 PM

    I saw her story on the news...

  • goddess99
    November 20, 2012 at 2:09 PM

    I've never heard of such a thing, interesting.

  • splatz
    by splatz
    November 20, 2012 at 8:15 PM
    This.

    Quoting la_bella_vita:

     I've heard of this. Very, very, sad. I couldn't imagine...

  • iknitsweatersyo
    November 20, 2012 at 8:51 PM
    One of our friends has this but not as bad as the girl in the article...he is totally out of it when he has an episode. He cant think normally and sleeps a lot. We went to visit him once when he was having an episode and we told him we had to leave to go pick up john(our ds) and after thinking about it for a minute he said(because his name is john too) "but im right here". He cant really comprehend what people are saying. The drs said it usually goes away by the age of 25 but he is 28 and still having episodes...
  • Dayna29
    by Dayna29
    November 20, 2012 at 11:37 PM

    Man, I thought my parents thought I was bad sleeping all the time. I could sleep for a couple of days. But never knew that was a condition people had. I don't think I had that though. I feel bad for the girl because she is literally sleeping her life away and can't help it. Poor girl.

  • Robbins3188
    November 21, 2012 at 1:30 PM

    Oh wow, that poor girl, i culdnt imagine have having to watch one of my children go throught something like that and seeing them miss out on so many things in thier lives...

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