NORTH FAYETTE, Penn. — Nicole Delien would like to spend this Thanksgiving and Christmas with her family. But there are no guarantees she'll be awake.
"She's only been awake for three Christmases since she was 7 years old," said Vicki Delien, Nicole's mother.
Now 17 years old, Nicole continues to battle with Kleine-Levine syndrome: a disorder that causes her to sleep for days, even weeks at a time. Her last episode was in February and lasted 32 days.
Kleine-Levin syndrome is a rare disorder that primarily affects adolescent males (approximately 70 percent of those with the syndrome are male). It is characterized by recurring but reversible periods of excessive sleep (up to 20 hours per day). Symptoms occur as "episodes," typically lasting a few days to a few weeks. Episode onset is often abrupt, and may be associated with flu-like symptoms.Source: National Institute of Neurological Disorders and Stroke
"It's difficult because I lost some friends," Nicole said. "And whenever I come back, everyone asks me where I've been."
During these episodes, Nicole will still eat and go to the bathroom — and may even talk — but she doesn't remember any of it.
"When she does get up, she's more in, like a trance. It's like a zombie, sleep walking-type phase," Vicki Delien explained.
"What it really is, is a periodic delirium — delirium being confusional state that's reversible," said Dr. Michael Rancurello, a physician at Allegheny General Hospital in Pittsburgh, Penn.
Rancurello was the first to diagnose Nicole — something that took two years from when she started showing symptoms at age 6.
But there are people even within the Deliens' family who don't believe in the disorder. Early on, Nicole's parents were even reported to Child Protective Services.
"That was really scary," Vicki said, "and it's frustrating to know that there were doctors out there that just can't listen to you."
Nicole has missed family vacations, birthdays, even the last few days her grandfather was alive.
"It's hard for me to talk about it because I missed out on a lot, and I wish I hadn't," Nicole said.
This condition is also known as "Sleeping Beauty syndrome," a name Nicole says does not apply.
"I just don't like people calling it a ‘fairy tale,' ‘cause it's really not a fairy tale," she said.