Life

Nov 28, 2018 by Shehera Vega Sánchez

Jayne Is A Real-Life Sleeping Beauty: 'Even If You Aren't With The World, Everything Around You Is Still Going'

Jayne Butler suffers from the 'Sleeping Beauty' syndrome, a rare neurological disorder characterized by excessive sleeping. The 19-year-old from California often sleeps over eighteen hours per day and usually has frightening nightmares, according to the Daily Mail.

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into the wild 🌟🌞

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Sleeping Beauty
Being a real-life sleeping beauty isn't as magical as it sounds. Officially named the Kleine-Levin syndrome, this rare sleeping disorder affects one in one million people. Jayne's episodes can last days, weeks or sometimes even months. During her episodes, Jayne has difficulties maintaining her social life and doing her daily activities. She'll spend most of her day in bed.

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good morning 🍵

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"When I'm not in an episode, I'm completely my normal self," Jayne explains. "I'm a college student, and I go about my daily life. During episodes, it's just uncontrollable. Most of the time I'll be sleeping for around 18 hours a day out of 24, sometimes even more. The dreams are very, very vivid, much more than usual."

'even if you aren't with the world, everything around you is still going'

"Sometimes my dreams are really good, and it's kind of fun because you can almost pause your dream and then wake up and then when you go back to sleep just continue the dream. However, sometimes the dreams are super trippy and scary, and it's just terrifying because you can't choose to wake up."

Significant Effect
Even though the episodes come and go, they have a significant effect on Jayne's life. She regularly misses college classes and sadly has to skip her biggest passion, her dance performances. The long-lasting episodes take a massive toll on Jayne. It sometimes feels impossible for her to get back on track again. "It's just crazy to think about the fact that even if you aren't with the world, if you're asleep for a month, everything around you is still going," she tries to explain. "No one stops for you."

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“LOOK @ LIFE THRU ROSÉ COLORED GLASSES 🤩✨” that was what i was planning on captioning this pic. just that. my $1 glasses were so dirty i could barely “look thru” them and i can’t drink rosé anymore 🥂 but the caption was punny and tbh the caption was what i thought people wanted to hear from me. my entire life i have strived to look at everything and everyone through rose/rosé colored glasses…to be optimistic and cheerful. i wanted to always stay positive and i rarely let people see me cry. my rose colored glasses shattered this past year though, when i was diagnosed with an incurable disease called #KleineLevinSyndrome (KLS) 🥀. when i talk about KLS i always start shaking because it is a horrifying disease to think about but, to put it shortly, KLS is a disease that affects 1-in-1 MILLION people that forces me to fall uncontrollably into episodes of hypersomnia 💤. i can be trapped in REM sleep for up to 24 hours a day, only waking up occasionally to eat and use the restroom. and let me tell you, this is not a restful sleep... many of my vivid dreams are filled with frightening, intense nightmares that i become prisoner of 💭. in between KLS episodes though i am completely back to my normal self, so unlike having a broken bone and going around life with a cast on, most people would never think i have a disease at all 🤷🏽‍♀️. these episodes can last for months at a time. i have had KLS episodes hit in the middle of college. KLS has stopped me from being able to celebrate my mom’s birthday, my dad‘s birthday, thanksgiving, the holidays, new near’s, and other momentous days. KLS has robbed me of ever performing dance pieces i had worked my ass off rehearsing for. KLS has taken away my beloved long hair because after being in an episode for a month my hair was so knotted it had to be chopped off ✂️. KLS has destroyed friendships in the making because it is hard to keep in touch with people when you are asleep for weeks or months at a time. KLS has robbed me from my own life. KLS is known in the media as “sleeping beauty syndrome” 😴👑 but many of us with KLS dislike this nickname because unlike a disney character i am not glamorous, beautiful, or (CONT. ⬇️)

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Raising Awareness
Jayne, however, hasn't given up on her dreams. She keeps on dancing and studying for college, and in her spare time, she educates other people on the Kleine-Levin syndrome, to raise awareness and ensure others get the correct diagnosis.

"Sometimes people will get misdiagnosed as having a 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 said. "It's really sad, so I want to work to spread awareness so that people can get correctly diagnosed and get the help that they need."



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