Attractive 20-year-old sleeping beauty has to put life on hold as she sleeps for up to 22 hours a day
An attractive 20-year-old real-life “sleeping beauty” has had to put her young life on hold as she can sleep up to 22 HOURS A DAY.
Beth Goodier, from Stockport, Greater Manchester, suffers from Kleine-Levin Syndrome (KLS) – a neurological condition otherwise known as ‘Sleeping Beauty’ syndrome.
Each of Beth’s episodes can last up to five weeks at a time leaving her asleep for up to 22 HOURS A DAY.
Like most 20-year-olds, Beth should at university living the student life but can’t move out as she needs round-the-hour attention from her mum, Janine, whenever an episode strikes.
A frustrated Beth said: “It’s like someone has pressed pause on my life.
“Most of my friends have moved out of their parents’ to other cities but I can’t.
“When an episode hits I need mum to look after me constantly.
“That’s what really annoys me about it being called ‘Sleeping Beauty’ syndrome, like it’s some sort of fairy-tale.
“It’s really not – I feel like KLS is stealing my youth.”
Beth was 16 years old and had just started college when she noticed the first symptoms of the condition.
In her first few weeks, she used to come home exhausted and collapse on the sofa all night.
Beth said: “At first mum would laugh saying I was being a stereotypical teenager.
“After a while though she got annoyed and told me it was all part of growing up and I had to get on with it.
“Of course we had no idea what was wrong with me, but the first half-term I slept for the whole week.”
It’s a far cry from what she was like at high school, when she used to wake up early and never sat around.
However, in the last four years she has watched from the sidelines as her closest friends sit A-levels and move away to university.
In contrast, Beth has started college four times and had to drop out on each occasion because she has missed so much work.
Where most teenagers go abroad on their first holiday without parents, Beth has been unable to.
Beth said: “It’s so annoying waking up and seeing on Facebook that everyone has been out having a good time while I’ve been asleep.
“Ever since I was diagnosed I’ve missed every New Year’s Eve which is really annoying.
“I was lucky to be awake for my 18th and I’ve only miss one Christmas so far.
“But I’ve missed so many birthdays I’ve lost count.
“It might seem trivial to other people but these are really important milestones in growing up.”
Whenever an episode hits, her mum, Janine, has to be her full time carer and has even had to quit her job.
Other side-effects of an episode are that Beth will constantly gorge on unhealthy food and that she becomes really clingy.
Because of the unpredictability of the condition, Beth and her boyfriend of 18months have been unable to progress their relationship.
She said: “We always say we will go away, but it’s impossible to predict.
“We’ve tried booking a weekend break together but even that hasn’t worked.
“It puts a lot of strain on the relationship as we can’t be like other couples.”
KLS is thought to affect only 1000 people worldwide – 70% of them male – and it is not clear what causes it or if there is a cure.
It usually effects people as puberty hits and can stay with them for 10- 15 years, although in some cases it can be permanent.
Even when Beth is awake, the condition means she suffers from derealisation and her senses are diminished.
This means her eyes are extremely sensitive to light and the curtains have to be drawn to protect her from the brightness.
In addition, Beth is in a child-like state when she is awake during episodes, even reverting to speaking and acting like a toddler.
As a result, Janine and the rest of the family have to make the most of the time Beth is awake.
Janine said: “When Beth is well we have to seize the opportunity.
“No longer can we say ‘We’ll do that next week’, we just have to go for it.
“When she’s up, all she does really is, she’s either in bed or on the sofa.
“She’ll watch telly, often the same things over and over again as she likes predictability.
“The easiest part of the condition is the sleeping – everything else like the derealisation or the cognitive impairment is the most difficult to deal with.”
Currently, Beth’s studies are on hold, but she is hoping to continue them full time once the condition has “burnt out”.
Beth said: “Before I got KLS, I knew what I wanted to do in my life.
“I had my career and everything planned out.
“At first I said I would go back to college but now I don’t know.
“Once this is over I just want to do something productive – that’s all.”
For more information on Kleine-Levin Syndrome, visit http://kls-support.org.uk/articles/10.