Woman With “Sleeping Beauty Syndrome” Sleeps for Months at a Time

We all like to kid around about how sleeping a few extra hours would be like a gift sent from above. But what would happen if you could never wake up from your powernap? Even worse! What if you woke up only to realize you’ve been sleeping for months at a time? No one knows how destructive oversleeping can be than Beth Goodier, who was 22 years old in 2016. She was diagnosed with Kleine-Levin syndrome in 2011, and for the last couple of years, she’s been relying on her mom to take care of her while she dozes off.

Life Interrupted

Facebook / Beth Goodier

Beth Goodier was just 17 years old when she fell asleep one day and couldn’t wake up “properly” for a full six month period. Instead of studying in university, going out with friends, dating around, and moving out of her parent’s house, Beth was forced to spend the next few years in and out of months-long sleep sessions, where she only woke up only long enough to be able to eat and go to the toilet.

It’s a Super Rare Condition

Facebook / Beth Rose Goodier

Beth’s condition has been dubbed, “Sleeping Beauty syndrome”, but this syndrome is actually quite a rare, debilitating disorder called Kleine-Levine syndrome (KLS). Only about 1 in a million people suffer from this condition all over the world. During an episode, a person may sleep for 15 to 21 hours a day, and act spacey and confused when they finally wake up.

Sleeping is the Easy Part

Facebook / Beth Goodier

If Beth manages to wake up during an episode, she reports feeling in a daze. She’ll speak in a baby voice, starts acting like a child by throwing tantrums, and she’ll even shove a bunch of junk food all at once. She doesn’t know what’s real and what isn’t, so she walks around the house in a total state of confusion. So, even though she is awake, she doesn’t really feel awake at all! She can’t do much other than watch TV and compulsively eat unhealthy foods when she is awake at those times.

It Lasts for Years

Facebook / Beth Goodier

People who suffer from this condition start showing early signs of KLS when they are teenagers and can have around 20 episodes over the course of 10 years. During an episode, people can sleep most of the day for weeks at a time. Or like in Beth’s case, they could fall asleep for months at a time, even! Beth reports being asleep or undergoing episode for around 75% of the time ever since she started showing signs of KLS.

It Just Got Worse

Facebook / Beth Goodier

In the first few years of her condition, Beth managed to live a pretty normal life when she wasn’t having one her “Sleeping Beauty” episodes. She had a boyfriend, ate healthy foods, and went to the gym any chance she could. She told BBC in 2014, that “Anything I can do to help my health I’ll do because I’m so unhealthy in other aspects.” However, in the past few years, Beth was also diagnosed with a connective tissue disorder, which unfortunately limits her mobility. She now spends most of her awake time in a wheelchair.

Doing Their Best to Stay Positive

Inside Edition

Beth and her mother run a Facebook page where they occasionally update folks on Beth’s condition. They also sell some handmade crafts to raise money for Beth’s medical costs. They make sure to try to stay as active as possible by posting pictures of Beth, as well as inspirational messages and a link to a BBC video about Beth.

Staying in Touch

Facebook / Beth Goodier

One of the latest posts on her Facebook page was written by Beth’s mom. She wanted to quickly touch base with her daughter’s followers and explain why they’ve been absent for a few months. Needless to say, Beth’s family were dealing with a lot! She wrote:

Hello everyone. This is Beth’s mum. We apologise greatly that we have allowed this profile to go unattended. We have been having a tough time. So here is a little update. Beth’s Kleine-Levin syndrome remains as active as ever (Beth is currently in an episode), with episodes normally lasting 2-3 months each time.

In 2016, after many new health problems and increasing amounts of constant pain, Beth was also diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder that can affect the entire body. During the last few years her mobility has grown increasingly worse and she now has to use a wheelchair almost all the time. Earlier this year, her 26 year old brother, suffered from a sudden, near fatal brain haemorrhage. Fortunately he survived and is recovering well but it was a very difficult time for us all, especially as Beth was in an episode when it happened.”

Needing Constant Care

BBC

Janine, Beth’s mother, takes care of her daughter full-time. It’s not like she’s got a lot of options, sadly. While Beth wishes she was able to move around and live independently, that doesn’t seem like a realistic option at the moment. Janine, who’s a single mother, had to even quit her job so that she could be available round the clock to take care of Beth. There is not much they can do when an episode starts other than wait it out and hope that tomorrow will be a better day.

There Is Hope

Facebook / Beth Rose Goodier

KLS episodes usually get further and further apart until the condition seems to wear off. This usually happens around a decade after the syndrome first appears, with the average being 13 years. Janine holds out hope that this will be the case for her daughter, who will one day awake to fully live her life. We’re definitely crossing our fingers so that this lovely young lady is finally able to be in control and live a healthy happy life! If you’re curious about Beth’s diagnosis, then make sure to check out this eye-opening documentary that was released by the BBC:

https://www.youtube.com/watch?v=nlLf2ki_KAc