Sleeping beauty: Louisa Ball suffers from Kleine-Levin Syndrome, a rare condition where people sleep for weeks at a time She is known to her family and friends as 'Sleeping Beauty' - but her life is no fairytale.
Louisa Ball, 15, sleeps for two weeks at a time because she suffers from an incredibly rare disorder.
She misses school exams, dance lessons and even missed an entire week’s holiday away with the family as she slept the whole way through.
Louisa, who lives in Worthing, has been diagnosed with Kleine-Levin Syndrome - also known as Sleeping Beauty Disease - where sufferers can fall into deep sleeps that can last for weeks.
She first developed the disorder in October 2008 after recovering from a bout of flu.
Her mother Lottie, 45, said: ‘She had a dose of flu that lasted for about a week but she never really recovered properly from it.
‘We afterwards found out that it was the start of a sleep mode, which comes before the deep sleeps.
‘She was exhausted and didn’t seem to be getting any better. She started to fall asleep at school and was rambling about things that didn’t make sense - just like she was talking in her sleep.
‘It really scared us, we didn’t know what to do. It just didn’t seem like Louisa was the daughter we used to know - she was like a different person.’
Louisa was referred to Worthing General Hospital in November that year and the paediatric consultant there told the couple that he didn’t know what was wrong with Louisa, but it may be hormonal.
By then Louisa was sleeping for ten days at a time. She would sleep deeply for 22 hours, then her parents would wake her just long enough to give her some food and take her to the toilet, then she would fall back to sleep.
Scared: Louisa with father Richard and mother Lottie, who said she seemed like a different person Her father Richard Ball, 44, a surveyor, said: ‘She couldn’t do anything but sleep. She couldn’t go to school for days at a time when she was asleep.
‘It was very hard to wake her but we knew that we had to give her food and water. We would hurry to get her to eat her food whilst we could, but she would always be rambling and wouldn’t make any sense.
‘It was like she was sleep walking and talking in the times we did manage to wake her up. After she had been asleep for a week or ten days, she wouldn’t remember anything about it.’
Louisa was referred to St George’s Hospital in Tooting in March last year and a Consultant Paediatric there eventually diagnosed her with Kleine-Levin Syndrome.
The syndrome is a rare form or periodic hypersomnia, where sufferers have periods of prolonged sleep.
Doctors don’t know what causes it, although it is thought it may be related to malfunction of the hypothalamus, the part of the brain that governs appetite and sleep.
It is more common in males than females and usually disappears in adulthood, and between sleep periods the sufferer recovers completely.
The couple, who also have a 14 year old son Ross, had never heard of the illness before.
Mr Ball said: ‘We had no idea that there was such a thing, but it was a relief once Louisa was diagnosed.
‘The consultant who diagnosed her had heard of other case before.’
There is no definitive treatment for Kleine-Levin Syndrome, although some patients are given stimulant drugs to try and keep them awake.
Louisa was put on medication but it didn’t work and after her diagnosis she started falling asleep for upto 12 days at a time.
Mr Ball said: ‘We know when Louisa is starting to go into sleep mode as she becomes irritable, so we do have some warning.
‘But last summer we were on our way back from a family holiday in Malaga and started to go into sleep mode as we were driving to the airport.
‘She fell asleep on the plane on the way home and we had to lift her off the aeroplane once all the other passengers had got off.
‘We put her in the car, drove home, and she slept for another seven days.
‘We went on a week’s caravanning holiday last year and she slept for the entire holiday - she missed the whole thing.
‘She was really annoyed when she woke up and found she had missed the holiday, but there was nothing we could do.
‘When she wakes up afterwards she goes straight to the biscuit cupboard and raids it. She is so hungry, its like she has been hibernating.’
When she’s awake Louisa loved school and her regular dancing classes - but she’s had to miss dance competitions and school exams because she has been asleep for them.
Mrs Ball added: ‘She is behind in her classwork and she has missed coursework too.
We don’t know what will happen when she sits her GCSE’S - hopefully the school will allow her to take them during the times that she is awake.
‘She wants to study for a BTEC in sport and dance when she leaves school but she needs five GCSE’s to do that. We can only hope she stays awake long enough to get her qualifications.’
Louisa has just been put onto a new medication that her parents hope will help reduce her sleep patterns.
Mr Ball said: ‘it does look promising. She hasn’t fallen asleep properly for about seven weeks now so we are hoping it will reduce the severity of the attacks and allow her to get on with her life.’
For more information visit the KLS Foundation at www.klsfoundation.org
source: dailymail
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