A real-life 'sleeping beauty': Meet the 17-year-old girl with condition that made her sleep for 64 DAYS

Nicole Delien, 17, diagnosed with rare sleep disorder will sleep 18 to 19 hours a day

She once slept for 64 days, missing Thanksgiving and Christmas



Nicole's condition, Kleine-Levine or 'Sleeping Beauty Disorder', primarily affects adolescents

An estimated 1,000 people around the world suffer from Kleine-Levine



A Pennsylvania teenager slept for 64 days from Thanksgiving into January -- her longest sleeping episode yet.

Nicole Delien, 17, struggles with a rare sleep disorder called Kleine-Levine, or ‘Sleeping Beauty' Syndrome, which affects an estimated 1,000 people around the world.

During her sleep spells, which began when she was six and a half, Nicole will wake up in a confused state for small periods of time to eat, drink and use the bathroom and then fall back to sleep.

'I don't remember what happens (during that time),' she told the Today Show on Tuesday. ' It's hard for me to talk about it, because I've missed so many days of my life. I just don't like when people call it a fairy tale, because it's really not.'



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Rarely awake: Nicole Delien, 17, is afflicted with Kleine-Levin Syndrome, a rare disorder that causes her to sleep 18 to 19 hours a day Family care: Nicole with her younger sister and brother, who do not have the same condition as her

Nicole’s mother, Vicki, says her daughter will sleep 18 to 19 hours a day, and when she eventually wakes up to eat she is in a ‘sleepwalking state which she doesn’t remember,’ KDKA in Pittsburgh reported last week.

The Delien family also recently appeared on Jeff Probst’s syndicated talk show to make sure other families become aware of the rare disorder.

Vicki Delien told reporters that it was very frustrating trying to get a diagnosis for her daughter. She said it took several hospital trips to figure out what has been afflicting her.

Eventually, Dr. Michael Rancurello, a psychiatrist at Allegheny General Hospital in Pittsburgh, Pennsylvania, was able to pinpoint the disorder and offer some suggestions on how to manage it, including medication.

'It's really not sleeping,' he told the Today Show , calling Nicole's unconscious state a 'delirium .'



'I think it's a manifestation of some brain malfunction,' he said.

On television: Nicole with her mother, Vicki Delien, and her psychiatrist, Dr. Michael Rancurello, on the Today Show

Individuals affected with the disorder may go for a period of 'weeks, months or even years without experiencing any symptoms, and then they reappear with little warning’ the Kleine-Levin Syndrome Foundation website states.

In addition to excessive sleeping, those symptoms include disorientation, hallucination, child-like behaviour, binge-eating and periods of hyper-sexuality when awake, according to an Oxford Journals report.

That report says the disorder predominately affects young males.

Raising awareness: Nicole with her parents on the Jeff Probst Show

Symptoms may be related to malfunctions in the parts of the brain that govern appetite, sleep and sexuality, according to the National Institute of Neurological Disorders and Stroke.

The cause of Kleine-Levin Syndrome is unknown, both medical sources indicate.

Eric Haller, a young college student with the disorder, told ABC News in February that he gets sick and falls into a sleeping episode about eight to 10 times a year.

He still shows an aptitude for working and learning. The 21-year-old from Placentia, California, maintains a 3.5 average at Fullerton State University and interns for the Los Angeles Clippers. However, his abilities decline when he slips into a trance.

On the verge of sleep: Video footage of Nicole before she fell asleep for 64 days

Deep sleeper: Video footage of Nicole after she passes out

Kleine-Levin Syndrome can last for eight to fourteen years of an afflicted person's life, Dr. Rancurello said, noting that Nicole is reaching the mean length of symptoms right now. Medication helps spread her episodes further apart, her family says.

Still, Nicole says she has missed out on Thanksgiving, Christmas and other family celebrations due to those spells.



She also missed out on an opportunity to meet pop singer Katy Perry. But when Perry later learned about Nicole’s disorder she made sure Nicole was able to visit her backstage at a performance in Connecticut.

As she grows older, Nicole says she hopes to have 'more good memories like that one.'



Nicole’s last sleeping episode was in March.



She said that she’s scared of when it will happen again.

VIDEO: "Sleeping Beauty" Syndrome Explained:



