Nicole Delien, a Pennsylvania teenager, slept for 64 days from Thanksgiving into January – her longest sleeping episode yet – as she 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 Delien, now 17,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],” Nicole Delien 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.”
Nicole Delien’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 Delien’s unconscious state a “delirium”.
“I think it’s a manifestation of some brain malfunction,” he said.
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 behavior, binge-eating and periods of hyper-sexuality when awake, according to an Oxford Journals report.
That report says the disorder predominately affects young males.
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.
Kleine-Levin Syndrome can last for eight to fourteen years of an afflicted person’s life, Dr. Michael Rancurello said, noting that Nicole Delien is reaching the mean length of symptoms right now. Medication helps spread her episodes further apart, her family says.
Still, Nicole Delien 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 Delien’s disorder she made sure Nicole was able to visit her backstage at a performance in Connecticut.
As she grows older, Nicole Delien says she hopes to have “more good memories like that one”.
Nicole Delien’s last sleeping episode was in March.
She said that she’s scared of when it will happen again.
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