Nicole Delian, a 17-year-old teenager from Pennsylvania, slept for 64 days from Thanksgiving into January â her longest sleeping episode yet, reports LOLSet.
The girlâs mom, Vicky Delian, says her daughter will sleep 18 to 19 hours a day, and when she eventually wakes up to eat she is in a âsleepwalking state which she doesnât remember,â KDKA in Pittsburgh recently reported.
Vicki Delien added that it was very frustrating just getting a diagnosis for her daughter. It took them several hospital trips to understand what was going on with the girl. Actually it took the family 25 months to diagnose such a rare disease.
Nicole has a younger sister and brother, who, fortunately, do not have the same condition as she does. Finally, a doctor at Allegheny General Hospital in Pittsburgh, Pennsylvania, managed to identify the disorder and offer some suggestions on how to cope with it, including medication.
Some treatment and medication help the sleeping episodes happen less often. The last one occurred in March, but Nicole says sheâs scared of when it will happen again.
“She’s never really adjusted to it,” her mother said. “She’s 17 now and it really upsets her. She’s missed out on a lot.â Nicole says sheâs missed out on Thanksgiving, Christmas, birthdays and even the first family trip to Disney World.
She also missed out on an opportunity to meet pop singer Katy Perry. But when Perry later learned about Nicoleâs disorder she made sure Nicole was able to visit her backstage at a performance in Connecticut.
The family last week appeared on a national US talk show hosted by Jeff Probst to make sure other families become aware of the disorder.
More than 70 percent of those who have Kleine-Levin Syndrome (KLS) Â are male, and it affects only about 1,000 children and young adults worldwide.
According to the Kleine-Levin Syndrome Foundation, KLSÂ is a rare and complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily.
At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom.
When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy).
Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves.
The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families.
Actually doctors know little about the disorder but suspect it may be related to a malfunction of the hypothalamus and thalamus, parts of the brain that control appetite, sleep and sexuality.
Eric Haller, a young college student with the same disorder, told ABC News that he gets sick and falls into a sleeping episode about eight to ten times a year. He falls into a dreamlike state and is unable to do simple cognitive tasks, like reading, adding up numbers or comprehending his favorite TV shows.