A young woman in Minnesota has been diagnosed with a rare sleeping disorder that can cause her to sleep for weeks at a time. Afflicted with Kleine-Levin syndrome, also known as Sleeping Beauty syndrome, Delanie Weyer can suddenly feel tired and then sleep for two to five weeks.
The 23-year-old first experienced an episode in her late teens when she was on a school trip. “When I was 18, [I had] my first episode, is what they call it,” Weyer told CBS Minnesota. “I was sleeping a lot. When I was awake, I was delusional.” She said that she barely remembers the episode, and a similar thing has happened four times each year since then.
“I sleep anywhere from 15 to 20 hours a day” during an episode, she said. “When I am awake, I’m very spacey, delusional, just not in touch with reality. I just have no motivation to do anything, very depressed feeling, really frustrated because I don’t know what’s going on.” When she’s suffering from an episode, Weyer says, she only gets up to eat, drink, and use the bathroom — and the last time this happened, it went on for five weeks.
“I’ve missed major life events, I’ve missed a Thanksgiving, I’ve missed Easter,” Weyer said. “I missed my grandpa’s 85th birthday. I missed my 21st birthday because I was in [an] episode.”
At one point, her mom, Jean Weyer, had to fly to Wyoming to bring her home because she wasn’t awake enough to get herself home.
Weyer’s mom says that she couldn’t understand why her daughter was sleeping all the time: “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,” she said. After seeing multiple therapists and doctors, Delanie was finally diagnosed by a sleep disorders specialist.
Sleeping Beauty syndrome is extremely rare. “It’s one in a million — literally,” sleep medicine doctor and neurologist W. Christopher Winter, MD, of Charlottesville Neurology and Sleep Medicine and author of the upcoming book The Sleep Solution: Why Your Sleep Is Broken and How to Fix It, tells Yahoo Beauty. Winter says that the condition is “so rare, it’s difficult to study.”
According to the Kleine-Levin Syndrome Foundation, the condition is a “rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world.” Sufferers are usually teenagers, but the condition can also occur in children and adults, the organization says. During episodes, people are not able to care for themselves, or go to school or work. “In between episodes, those with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction,” the organization says, noting that episodes can go on for 10 years or more.
Sanjeev Kothare, MD, professor of neurology at the NYU Langone Comprehensive Epilepsy Center—Sleep Center who regularly treats people with Sleeping Beauty syndrome, tells Yahoo Beauty that it’s “completely debilitating. … 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,” he says. “All they do is wake up, eat, and go back to sleep.” They can also be hypersexual when they’re awake.
Experts aren’t completely sure what causes the condition, but Winter says it may have a viral origin. “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,” he explains. “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.”
There is no cure for the syndrome, but once a person receives a diagnosis, doctors can treat it using stimulants like Ritalin or Adderall. “These can be helpful when the individual wakes up to help them maintain their wakefulness,” Winter says. Lithium has also been used in some instances to help reduce the duration of the episodes.
While the condition is rare, it is important for people to be aware of it, Kothare says — he’s had several patients who were almost put in a mental institution because their parents didn’t understand what was happening. “There are a lot of misdiagnoses with this condition,” he says.
Sleeping Beauty syndrome is disruptive, but it does seem to resolve on its own over time. “In most cases, it spontaneously gets better,” Winter says. “Generally speaking, this isn’t a lifetime kind of thing.”