A Minnesota woman has slept through the majority of the last five years of her life because of a rare condition sometimes called Sleeping Beauty Syndrome.
Delanie Weyer, 23, tells PEOPLE she suffers from Kleine-Levin Syndrome (KLS), a neurological disorder that affects one in a million people.
“KLS can be different for everyone, but for me, I sleep anywhere between 15 to 20 hours a day when I’m in episode,” explains the Minnesota-based Weyer. “When I am awake I’m very delirious – just very spacey and out of touch with reality, in a sense. I only wake up to go the bathroom and eat.”
Her most recent episode – the longest yet – lasted five weeks. Weyer was 18 when the onset of symptoms began. On a high school field trip to a young business leaders competition, Weyer slept through her event, then began acting lethargic and delirious.Her chaperones thought she was on drugs.
Throughout the next five years, Weyer saw a variety of doctors and was misdiagnosed multiple times before a sleep specialist determined she had KLS in November 2016.
While there’s no cure for KLS, Weyer takes lithium to decrease the number of episodes she suffers, as well as their severity.
In addition to sleeping, Weyer’s bouts also bring memory loss. “When I finally come out of it, I don’t remember much. Like, I have pictures of me doing certain things with family and friends during an episode and I don’t remember,” she details.
“Once I drove two hours in Wyoming and flew on a plane to go see my brother and I don’t remember that,” she adds. “It’s very scary the things that I have done while in episode — when I look back at how dangerous it could have been.”
The overall impact on her life has been “drastic,” Weyer says. She missed finals one semester during her four years at St. Cloud State University, and she’s lost a job and even relationships.
“It’s so under reported and misdiagnosed,” she tells PEOPLE. “To tell someone, ‘I can’t get up and go to work today because I’m in episode’ – they don’t understand.”
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Luckily, her employers are “super understanding” about her situation. The drug and alcohol counselor also praises her supportive family, especially her mom, who acts as her primary caregiver during her bouts with the disorder.
Though Weyer has never met anyone else with KLS in person, she’s connected with others online. “It’s important to me to educate and to advocate for the KLS community because there’s not very many of us,” she says. “To have a rare disorder, there’s so many obstacles that I have come through in life.”
She adds that by sharing her story she hopes to help “at least one person discover that what they’re going through might be KLS.”