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 she will wake up in a confused state for small periods of time to eat and go to the bathroom and then fall back to sleep.
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 recently reported.
The Delien family also appeared on Jeff Probst’s syndicated talk show this week 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’s been afflicting her.
Finally, a doctor at Allegheny General Hospital in Pittsburgh, Pennsylvania, was able to pinpoint the disorder and offer some suggestions on how to manage it, including medication.
‘Affected individuals 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, 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.
Symptoms may be related to the parts of the brain that govern appetite and sleep, 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 that he gets sick and falls into a sleeping episode about eight to 10 times a year.
Medication helps spread Nicole’s sleeping episodes further apart, her family says.
Nicole says she has missed out on Thanksgiving, Christmas, birthdays and the family’s first trip to Disney World.
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.
Nicole’s last sleeping episode was in March. She told KDKA that she’s scared of when it will happen again.
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