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The REAL Sleeping Beauty

Monday, October 20, 2014

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Teenagers are known for their ability to sleep for hours on end.
But one young woman suffering from a rare condition gets up to 22 hours of shut-eye a night.
Beth Goodier, 20, suffers from Kleine-Levin Syndrome, also known as 'Sleeping Beauty' syndrome, which dominates her life.
The neurological condition - which began when she was 16 - means she sleeps, on average, for 18 hours a night.
Beth Goodier, 20, suffers from Kleine-Levin Syndrome, also known as 'Sleeping Beauty' syndrome
Beth Goodier, 20, suffers from Kleine-Levin Syndrome, also known as 'Sleeping Beauty' syndrome 
Speaking on BBC Breakfast this morning, she described how the condition triggers episodes every five weeks. The condition is characterised by periods of excessive sleep of around 20 hours a day
When an episode strikes, typically every five weeks, she can sleep for anything between one and three weeks - and requires 24 hour care. 
Even when she wakes, she can be in a child-like state, confused and not able to tell the difference between reality and dreams.  
It's thought only around 1,000 people worldwide suffer from the disorder, 70 per cent of them male. 
It is not clear what causes it and there is no cure.  
Miss Goodier, from Stockport, Greater Manchester, appeared on BBC Breakfast this morning to discuss her situation, which triggers episodes every five weeks.
Discussing her frustration at the situation, she said: 'I spend half of my life in bed. The onset for most people is adolescence, when you are at college, university, getting a job, finding out who you are.
'It [Kleine-Levin Syndrome] takes all that away from you at a crucial time. My life is on hold.'
She added: 'I only remember snippets of an episode, so it's like half of my life disappears.' 
Miss Goodier was accompanied by her mother, Janine, who added: 'When she's up, all she does really is, she's either in bed or on the sofa and she'll watch telly, often the same things over and over again as she likes predictability.'
Upon eventually waking, Miss Goodier can be in a child-like state, confused and not able to tell the difference between reality and dreams. It means she must be constantly supervised by her mother Janine (pictured)
Upon eventually waking, Miss Goodier can be in a child-like state, confused and not able to tell the difference between reality and dreams. It means she must be constantly supervised by her mother Janine (pictured)
Mrs Goodier explained to Breakfast presenters Bill Turnbull and Louise Minchin how the family tries to make the most of the time between the Kleine-Levin episodes 
Mrs Goodier explained to Breakfast presenters Bill Turnbull and Louise Minchin how the family tries to make the most of the time between the Kleine-Levin episodes 
Patients return to normal between episodes, however they may become depressed as a consequence of the condition.
Mrs Goodier, who has been forced to give up work to care for her daughter, explained the family tries to make the most of the time between the episodes.

WHAT IS KLEINE-LEVIN SYNDROME? 

Kleine-Levin Syndrome is a neurological condition that starts during adolescence, and sometimes begins after an infection or illness.
It is characterised by periods of excessive sleep of up to 20 hours a day. Episodes can come on very quickly and last between a few days to a few weeks.
During such an episode a sufferer may be irritable, childish, disorientated and want to eat excessive amounts of food.
Patients return to normal between episodes, however they may become depressed as a consequence of the condition.
Around 1,000 people worldwide suffer from the disorder, which is commonly known as Sleeping Beauty Syndrome. Two-thirds of sufferers are male.
There is no known cure for the sleeping disorder, and the main treatment is watchful waiting at home by loved ones.
Research suggests episodes decrease in frequency and intensity over the course of 8 to 12 weeks. 
'On the odd time she's well we don't say any more, "We'll do that next week". 'We do it now when she's well because that might be the only time you get.'
Kleine-Levin Syndrome has had a devastating effect on Miss Goodier's life, stopping her from moving out of home or attending university, the BBC website reports. 
Because the condition causes her to often be in a child-like state when awake, she must be supervised by her mother.
During such an episode a sufferer may be irritable, childish, disorientated and want to eat excessive amounts of food. 
The disease tends to strike at a key time of life - during adolescence - and sometimes begins after an infection or illness.
Episodes can come on very quickly and last between a few days to a few weeks.
There is no known cure for the sleeping disorder, and the main treatment is watchful waiting at home by loved ones.
Eventually, the condition tends to 'burn out' after 10-15 years, doctors say. 
Miss Goodier added: 'I want to be able to do something productive in the time when I'm well.I want to productive for society,' she said on a programme aired tonight on BBC Inside Out North West. 
However she hopes by talking about her illness, she can raise awareness.  'There are Facebook groups, which have really helped. ' 
Miss Goodier's story features on BBC Inside Out North West tonight (Monday) at 7.30pm and will be available for 30 days on iPlayer after that. 
For more information on Kleine-Levin Syndrome, click here. 

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