Kleine-Levin Syndrome, also known as the Sleeping Beauty Syndrome, is one of the rarest sleeping disorders ever discovered. An Ontario teen has been suffering from the disorder since she was 15. During one of her episodes she can easily sleep for more than 20 hours a day, ten days at a time.
“It’s not just sleeping for ten days,” Kaitlyn explains. “I don’t remember anything. I can’t focus. I try to do my school work because I know I have to, but I can’t do it.”
Kaitlyn was only diagnosed this past June despite having symptoms for two years. She was first misdiagnosed with depression and complex-seizures. This is because there is no known cause for the disorder and doctors do not have a set test to diagnose it.
ABC News reports that only about 1,ooo people in the entire world are affected. The rarity of the disorder makes it even harder to find a treatment. Kaitlyn explains, “because it is so rare and there are not a lot of us in one area it makes it even harder to do a study on us.”
Symptoms of KLS include:
- Excessive amounts of sleep
- Binge eating
- Altered mental state
- Cognitive impairment
Kaitlyn sees Dr. David Callen every six months at MacMaster University Medical Centre. She has tried a few different drugs to alleviate her symptoms but nothing has had an affect.
“It’s zombie like episodes that they have,” Kaitlyn’s mother, Kathy, explains. “They don’t have empathy, they don’t know what they’re doing.”
Due to her altered mental state someone always has to be keeping an eye on her. Kathy says that “it’s definitely not safe for her to be on her own when she is in one of those episodes. The brain doesn’t know what’s right and what’s wrong at that time. It’s half sleeping.”
Kaitlyn lives in fear because she never knows when an episode will start. She missed her past two birthdays and now fears she may miss her graduation. She has already had to give up on the idea of going to university with her classmates as she is only able to take half of her grade 12 courses.
Her Sleeping Beauty Syndrome has put a strain on more than just her academics. The lack of awareness that KLS even exists means that it is hard for people to understand. “My friends thought I was just making things up,” Kaitlyn explains. “That I didn’t want to go out with them, that I was just depressed. They just think that it’s an attention disorder and I can basically prevent it. When in reality there is nothing to do to prevent it. If there were certain things I knew triggered it, I would stay away from those things as far as possible.”
Kaitlyn estimates she has lost up to 100 days of her life. On the bright side, the symptoms disappear in most cases when patients reach their twenties. Even for those whose symptoms last longer than ten years, their episodes become much milder.
Kaitlyn hopes to increase awareness for KLS by sharing her story and to raise money for research being conducted at Stanford University in California.
To learn more about how KLS effects Kaitlyn’s life, watch the video below.