In 2012, a 17-year-old girl named Nicole Delien slept for 64 days. It was her longest sleeping episode. During that time, doctors came up with multiple diagnoses, but none seemed to be quite right.
She was told that she had West Nile virus (an illness spread through mosquito bites), viral encephalitis (inflammation of the brain caused by a virus), a seizure disorder, confusional migraine, and manic depression.
According to Nicole’s mother, Vicki, Nicole will sleep for 18 to 19 hours a day. She will wake up periodically to eat, but is constantly in a sleepwalking state that she doesn’t remember.
Some doctors have suggested that Nicole’s parents could be drugging her, which triggered an investigation from Child Protective Services.
Finally, a doctor at Allegheny General Hospital in Pittsburgh figured out what was going on. Dr. Michael Rancurello diagnosed Nicole with a rare disorder called Kleine-Levin Syndrome (KLS), also known as Sleeping Beauty Syndrome.
When Nicole was six years old, she contracted a virus. Afterward, she seemed to somehow develop this sleeping condition. KLS is not well understood.
However, it affects more than twice as many boys as girls. The condition causes patients to sleep for up to 20 hours a day, and then they will enter a sort of twilight state that is similar to what sleepwalkers experience.
Dr. Rancurello describes it as more of a delirium. It’s like what happens after someone wakes up from anesthesia. The National Institutes of Health advises teens with KLS and their families to “wait out the syndrome” because it tends to eventually go away in most cases. Per the NIH, episodes become less frequent and intense over the course of eight to 12 years.
Dr. Rancurello has been a tremendous help to Nicole and her family. Medication has been pushing the sleeping episodes further apart.
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But managing the syndrome still hasn’t been easy. Nicole misses out on a lot of major life events, such as holidays, birthdays, and the first family trip to Disney World.
She even missed the death of her grandfather. He was alive when she fell into one of her long periods of sleep. But when she came to again, her parents had to break the news that her grandfather had died.
In addition, she has lost many friends throughout her life. It was difficult for her friends to understand exactly what was happening to her. Thanks to Nicole’s mother, some of her peers now know that KLS exists.
The episodes are unpredictable. Sometimes, Nicole is afraid to go to sleep at night because she doesn’t know when she’ll wake up next.
When she’s in that twilight state, she can feed herself a lot of the time, but her parents still have to take her to the hospital on occasion to get her rehydrated and fed through an IV tube.
Furthermore, Nicole is not truly conscious during her episodes, even when her eyes are open or when she’s talking to her parents. She does not remember what happens during these episodes.
Nicole wishes to continue spreading awareness and educating the public about the rare disorder. She also hopes to enjoy everything that life has to offer, including family vacations and working a job that she’s passionate about.
By Emily Chan
Emily Chan is a writer who covers lifestyle and news content. She graduated from Michigan State University with a degree in... More about Emily Chan
