17-year-old Pa. woman battles "Sleeping Beauty Syndrome"

A Pennsylvania teen is putting the spotlight on a rare sleep disorder called Kleine-Levein Syndrome, also known as "Sleeping Beauty Syndrome."

Nicole Delien is a 17-year-old from North Fayette, Pa. near Pittsburgh. Her mom Vicki told CBS station KDKA in Pittsburgh that her daughter sleeps 18 or 19 hours a day, only to wake up to eat in a sleepwalking state that she doesn't remember. Her longest sleeping episode lasted 64 days, from Thanksgiving into January, her mother said.

She's missed out on Thanksgiving, birthdays and family trips, but recently was diagnosed with the rare disorder at Allegheny General Hospital.

Kleine-Levein Syndrome (KLS) is characterized by recurrent and unusually long episodes of excessive sleepiness that affects behavioral and cognitive abilities and hunger, according to the Center for Narcolepsy at the Stanford University School of Medicine. The condition primarily strikes adolescents.

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Episodes of excessive sleep alternate with symptom-free periods, and the cause of the condition is unknown, although Stanford notes nearly half of patients experience flu-like symptoms a few days before their first KLS episode

When symptoms of KLS are present, they can last for days, weeks or even months, causing all normal daily activities to stop, according to the Kleine Levin Syndrome Foundation. They can't attend school, work or care for themselves, and most are bedridden and uncommunicative even while awake.

"In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction," notes the Foundation. "However they function daily with the frightful reality that they could become sick again at any moment."

No diagnostic medical test can confirm the disease, with patients showing normal results on brain scans, EEGS, and cerebrospinal fluid tests. Stanford University School of Medicine said the rarity of KLS, compared to the high-frequency of flu-like illnesses suggests some patients may be genetically predisposed to the disease.

Nicole told KDKA her last episode was in March and she's scared of when it may happen again. She takes medication to help spread the sleeping episodes apart.

At one point her parents won a contest for free tickets to a Katy Perry concert, but she had to sleep through it and miss it, according to the station. Perry learned about Nicole and invited her backstage to a Connecticut concert where she met the star.

Nicole also recently went on The Jeff Probst Show to discuss her ordeal.

The KLS foundation has more information on the rare disease.

[amy1987chico]

hello my name is amy allen.. and i have suffered for 5 year with kleine-levin-syndrome. and they put me on medication for epilepsy, it was a friend of my mums that found out what i actually had, i went to bristol to see professor david nutt he examined with his team of doctors he diagnosed me with this sleeping beauty syndrome. if you want to contact me i am more than happy for you to do so.. either add me on facebook or email me witch is.. [e-mail] as i dont want to leave my telephone number on hear i hope this can help as i know how your feelin your not alone and you will get over this one day xx amy xx the doctor said to me there was no known suffer's after the ages off 26year old hope this helps. i am 25 now am hopefully there are no lasting side affects as i havent had it since i was about 18 years old please get in contact when ever you want thanks x

[amy1987chico]

hello my name is amy allen.. and i have suffered for 5 year with kleine-levin-syndrome. and they put me on medication for epilepsy, it was a friend of my mums that found out what i actually had, i went to bristol to see professor david nutt he examined with his team of doctors he diagnosed me with this sleeping beauty syndrome. if you want to contact me i am more than happy for you to do so.. either add me on facebook or email me witch is.. [e-mail] as i dont want to leave my telephone number on hear i hope this can help as i know how your feelin your not alone and you will get over this one day xx amy xx the doctor said to me there was no known suffer's after the ages off 26year old hope this helps. i am 25 now am hopefully there are no lasting side affects as i havent had it since i was about 18 years old please get in contact when ever you want thanks x

[Yes_ABWH_Fan]

She needs to talk with Dr. Rezai at Ohio State University, and see if a Deep Brain Stimulator can be used to treat this disorder.
Dr. Rezai has successfully brought people out of long-term comas via DBS.
The issue is caused by a low level electrical threshold upon the gateways that allow neural circuits to open or close.
That is what keeps you mostly "frozen" while sleeping.
DBS "opens" those gateways, allowing the motor circuits to fire up again.

[Yes_ABWH_Fan]

She needs to talk with Dr. Rezai at Ohio State University, and see if a Deep Brain Stimulator can be used to treat this disorder.
Dr. Rezai has successfully brought people out of long-term comas via DBS.
The issue is caused by a low level electrical threshold upon the gateways that allow neural circuits to open or close.
That is what keeps you mostly "frozen" while sleeping.
DBS "opens" those gateways, allowing the motor circuits to fire up again.

[ThalenKane]

I moved to PA 5 years ago and developed a sleep disorder from a poor work schedule, but I have also started to develop a high fever and flu like symptoms 5 times / year. The doctors have not been able to figure out what it is, but it is always triggered by air pollution at work. The air there smells like some kind of fuel.

Is it known, what causes the fever and flu like symptoms?

[Ulgnud]

Based on the description it sounds like a coma where she drifts in and out. I am curios about no atrophy of her muscles from all this inactivity.

[erasmus111]

In the last 5 years, she's only been awake for ONE Christmas.