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Delanie Weyer, 23 years old, has been haunted by a rare condition called Kleine-Levin Syndrome, which is “a neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world,” as described by the KLS Foundation.
According to People, Weyer, who’s from Minnesota, slept through most of the last five years due to this condition. Also known as Sleeping Beauty Syndrome, only one in a million people has it.
Weyer explained to 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. 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.”
Weyer’s recent and longest episode yet put her into sleep for five weeks. It was when she turned 18 that symptoms of the condition began to appear.
During a high school field trip to a young business leaders’ competition, Weyer shared with People that she was asleep for the whole event. When she woke up, she was feeling tired, delirious, and disoriented. The adults she was with at that time thought she was on drugs.
Weyer then started to see several doctors and misdiagnosed multiple times. But when she saw a sleep specialist, that’s when she enlightened about her real condition. She only found out that she has KLS in November 2016.
There is, however, no known cure for KLS. Weyer can only do so much such as taking lithium to lessen the occurrence of the episodes.
Weyer said, “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 continued, “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.”
Weyer’s academic life had been greatly affected by the condition. When she went to St. Cloud State University for college, she said that she missed a slew of finals one semester. The condition also affected her employment and relationship status.
Weyer told People, “It’s so under reported and misdiagnosed. To tell someone, ‘I can’t get up and go to work today because I’m in episode’ – they don’t understand.”
Weyer now works as a drug and alcohol counselor. According to her, her employers understand what she’s going through and were willing to work around it.
Weyer said, “It’s important to me to educate and to advocate for the KLS community because there’s not very many of us. To have a rare disorder, there’s so many obstacles that I have come through in life.”
