She missed Thanksgiving, Easter, her grandfather’s 85th birthday and her own milestone 21st birthday.
She slept through them.
Only recently did 23-year-old Delanie Weyer of Minnesota learn why she suddenly becomes tired and sleeps for weeks at a time.
She has “Sleeping Beauty Syndrome,” a rare and complex neurological disorder.
“It is real. It is not precipitated by any psychiatric problems, not by bad behavior, it’s not laziness. It is a brain dysfunction,” Ranji Varghese, a psychiatrist and sleep specialist at the Minnesota Regional Sleep Disorders Center, told WCCO in Minneapolis.
Weyer is the first person he has diagnosed with the syndrome.
The medical term for Weyer’s condition is Kleine-Levin Syndrome. It strikes mostly adolescents, but it can occur in younger children and adults, according to the Kleine-Levin Syndrome Foundation.
The syndrome’s characteristics: excessive amounts of sleep, altered behavior and a reduced understanding of the world.
At the beginning of an episode the patient gets progressively drowsy and sleeps most of the day and night, sometimes waking only to eat or go to the bathroom, according to the foundation’s website, which offers a list of doctors familiar with the syndrome.
An episode can last days, weeks, months. Patients can’t take care of themselves, go to school or work. Episodes can continue for 10 years or more. In between, patients can appear in perfect health.
“It usually happens in boys, and they have episodes where they wake up one fine morning and then sleep for up to 20 hours a day, lasting anywhere from one week to four weeks,” Sanjeev Kothare, professor of neurology at the NYU Langone Comprehensive Epilepsy Center-Sleep Center, told Yahoo News.
Experts aren’t quite sure of the cause, but a virus might be the culprit, neurologist W. Christopher Winter of Charlottesville (Va.) Neurology and Sleep Medicine told Yahoo News.
“Most people think that some sort of virus happens that’s affecting the part of the brain stem that’s responsible for arousal and sleep,” Winter said.
“It could be that you get the flu, that triggers some sort of autoimmune response on a part of the brain responsible for wakefulness, and you end up with Sleeping Beauty Syndrome.”
The syndrome is so rare that it’s difficult to study, Winter said.
The next time Weyer has an episode her mother plans to take her to the Sleep Disorders Center where Varghese works so doctors can study what is happening to her.
Weyer experienced the first of five episodes when she was 18, she told WCCO. The last one lasted five weeks during which time she woke only to eat, drink and use the bathroom.
“I sleep anywhere from 15 to 20 hours a day. When I am awake I’m very spacey, delusional, just not in touch with reality,” she said. “I just have no motivation to do anything, very depressed feeling, really frustrated because I don’t know what’s going on.”
Before she was diagnosed, Weyer’s mother thought surely her daughter was just being lazy or worse, doing drugs.
“I’m the typical mom that would make her, force her to get up and she’s very irritable and again the blank stare and I question was she lying to me, was she being lazy, was she taking some kind of drug,” Jean Weyer told WCCO.
Doctors have treated several patients whose parents have come close to putting them in mental facilities because they didn’t know what was happening or their children were misdiagnosed.
Though there’s no cure, it’s been known to resolve itself, over time.
“In most cases, it spontaneously gets better,” Winter told Yahoo. “Generally speaking, this isn’t a lifetime kind of thing.”
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