Rare sleep disorder made 17-year-old girl sleep for 64 straight days | Healthquest | NewJerseyNewsroom.com -- Your State. Your News.


Jul 05th
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Rare sleep disorder made 17-year-old girl sleep for 64 straight days

HotTopicslogo_optBY BOB HOLT

A rare condition known as Kleine-Levin Syndrome makes a person sleep about 18 to 19 hours a day. It affects around 1,000 people worldwide.

One of them is 17-year old Nicole Delien of Pennsylvania, who once slept for 64 straight days, from November into January.

Mail Online reported that Delien’s first felt the sleeping condition at around 6 years old. She would wake up in a confused state long enough to eat and drink, and then fall back asleep. Mother Vicki Delien says she wakes up in a sleepwalking state, and doesn’t remember getting up to eat.

Vicki Delien said Nicole would fall into deep sleeps for days at a time, and her family would be unable to awaken her. Delien said, according to Chartiers Valley Patch, "It took us 25 months to land a diagnosis."

Nicole takes medication to help make the sleeping episodes less frequent. Her last experience was in March, according to CBS Pittsburgh, The teen has missed Thanksgiving, Christmas, birthdays and a family trip to Disney World.

KLS symptoms cause all normal daily activities to stop, according to the Kleine Levin Syndrome Foundation. According to wtsp.com, victims of the condition cannot attend school, work or care for themselves, and most are bedridden and uncommunicative while they are awake.

“In the beginning we thought she had the flu,” Vicki Delien said to TODAY. “But then she just became, as the days progressed, more confused and lethargic. We didn’t know what was going on. “

The National Institutes of Health advises people to wait out the condition, because it usually dissipates on its own. The NIH said, “Episodes eventually decrease in frequency and intensity over eight to 12 years.” A cure is unknown.

The unpredictability of the problem confounds Nicole Delien.  Sometimes I’m afraid to go asleep at night,” she said.


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