Kleine-Levin syndrome (KLS) is also referred to as “Sleeping Beauty syndrome.” But according to one California teen who suffers from the disorder, it’s not at all as “beautiful” as it sounds.
Jayne Butler is a 19-year-old from Thousand Oaks, California. Due to her KLS, she periodically suffers from episodes of falling into a deep sleep for extended periods of time. Jayne told SWNS that she has frequently slept for over 20 hours a day. During a particularly severe episode in 2017, she slept through both Thanksgiving and Christmas.
What’s worse is that the sleep Jayne has is hardly restful. She frequently has terrifyingly vivid and disturbing nightmares.
Even when she’s awake, she’s in a fog, experiencing “fuzziness” and feeling barely conscious. When an episode is coming on, Jayne will also feel her senses “kind of just degrade” leading up to its onset.
“I’ll just start to feel really weird and then all of a sudden I won’t be able to see. I’ll look in the mirror when I’m doing my makeup in the morning and not even be able to really see my face. It’s terrifying,” she explained. “It’s all my senses. My hearing kind of degrades. I’ll get a text from someone and not even know if what I’m looking at on my phone is real or not. You really start to dissociate from reality.”
Because KLS is so rare, affecting only about one in a million people worldwide, not many resources are invested in trying to find treatment or a cure. But by telling her story, Jayne hopes to spread awareness and help prevent others from being misdiagnosed and improperly treated by medical professionals.
“Sometimes people will get misdiagnosed as having bipolar syndrome or the doctors tell them, oh, you’re depressed. Then they get treated with hard drugs that don’t even help the KLS at all and just damage them more,” she told SWNS. “It’s really sad, so I want to work to spread awareness so that people can get correctly diagnosed and actually get the help that they need. I’d never heard of it until I was diagnosed.”
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