- Imaarl Duprey suffers from Kleine-Levin Syndrome, a rare neurological disorder that causes patients to fall into a sleep-like trance for days on end
- Dubbed a Sleeping Beauty Syndrome, an episode can cause a patient to become irritable, behave in a childlike way and overeat significantly
- Despite the disorder, Imaarl has managed to gain a degree in psychology from Goldsmiths University in London
By Daily Mail Reporter
PUBLISHED: 04:51 EST, 21 August 2013 | UPDATED: 06:43 EST, 21 August 2013
A young woman suffers with an incredibly rare disorder that causes her to sleep continuously for days and sometimes months on end.
Last year Imaarl Duprey, 23, slept almost continuously for 59 days and behaved as if she was a small child during the episode.
The graduate suffers from Kleine Levin Syndrome (KLS) - dubbed Sleeping Beauty Syndrome - which affects just 1,000 people in the world and can cause her to become incredibly drowsy without warning.
Imaarl Duprey, 23, suffers from Kleine Levin Syndrome, that causes her to fall in to sleep-like trances, become irritable and disorientated as well as want to eat excessive amounts of food
Imaarl, a fashion worker from Lewisham, London, is left in a dream-like trance or acts erratically during the few hours when her family wake her to ensure she eats, drinks and uses the bathroom.
She relies on round the clock care and assistance from her mum Kerry Griffiths, 46 and sister Shahnequa Duprey, 21.
'It’s had a really big impact on me and my family,' Imaarl said. 'In the early days of having KLS my mum thought I could be having a breakdown - I thought the same. I need constant supervision. My sister has been forced to miss university lectures and my mum has taken a lot of time off work.
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.
1,000 people worldwide suffer from the disorder, which is commonly known as Sleeping Beauty Syndrome. 70% 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.
'The condition has become a punishment for them, as well as me. I don’t know how I’d cope without them.
Mother Kerry, a teaching assistant, said: 'If it was just sleeping it would be so much easier.
'When I wake her so she can use the bathroom or eat something, she’s a different person completely.
'Imaarl’s gone. She’s somewhere else. She’s replaced by a toddler. It’s been a stressful time.'
Imaarls first developed the condition in 2008. She was 18-years-old when she slept for 10-days after a family party.
The episode was dismissed as a one off and Imaarl headed off on her first holiday with friends to Ayia Napa later that year.
But the drowsy symptoms of KLS returned and she only knew she’d been away after waking up with a sun tan.
Imaarl recalled: 'While I was at the airport waiting for my flight I was feeling fuzzy, but I thought it was the excitement and early start, and nothing sinister.
'When we reached Ayia Napa I had this drunken feeling, even though I hadn’t been drinking. I knew something wasn’t right, but I thought I could deal it or it would pass.
'One night I was in a club and I remember lying on the floor. Everyone was walking past me. Luckily, a group of teachers from my hotel found me and took me back to my friends. It’s terrifying to think what could have happened.
For most of the week long holiday, Imaarl fought off the sleep symptoms of KLS, but when she was back home she slept for ten days.
Vulnerable: During an episode, Imaarl, sleeps for days on end. She needs round the clock care to help ensure she is safe and make sure she gets enough food and water
'The holiday was a blur,' Imaarl continued. 'When I woke up the only reason I knew I had been away was my tan.'
Imaarl visited her doctor but did not get an answer - one GP dismissed her symptoms as simply being ‘typical teenage behaviour’.
Indeed It took years for Imaarl’s KLS to be properly diagnosed, as there is no test for the condition and it has to be established through a process of elimination with other disorders.
She underwent scans for a brain tumour and tests for narcolepsy at King’s College Hospital in London.
'It was traumatic, but in a way I was almost hoping for a brain tumour, because at least then I would know what was happening and there would be doctors and surgeons who could help,' she explained.
'With KLS there is so much uncertainty. You’re on your own. That’s the scary thing.'
Despite her debilitating condition, Imaarl (pictured, right, with sister Shahnequa) managed to graduate with a degree in psychology from Goldsmiths, University of London
Leading a normal life became difficult for Imaarl, but she was determined to complete her psychology degree at Goldsmiths, University of London.
Imaarl continued: 'At times I would suffer from extreme tiredness. I missed deadlines and had to leave classes because I was too exhausted.
'Some people assumed I was lazy or going to parties all the time. As time went by I started to recognise when an episode was starting.
'It’s like you’re going under anaesthetic. You’re floating in and out of consciousness. You can feel it coming on.
During her time at university Imaarl would suffer from extreme tiredness. She missed deadlines and had to leave classes because she was exhausted
'One day I came out of a class at university and I just started crying. I was completely disorientated. I couldn’t remember how to get home. I had to call my mum for directions, as she drove to find me.'
In 2010, Imaarl suffered an episode that lasted a month and she missed vital exams which meant she had to re-sit her final year.
Her mum said: 'I knew how devastated she was going to be when she came round. She sobbed her heart out when she found out she had been sick again.'
During an episode, life changes dramatically for Imaarl, and her mum and sister.
As KLS heightens noise and light sensitivity, Imaarl sleeps with the curtains drawn, conversations are kept to whispers, the TV is virtually silent and visitors are turned away.
Kerry said: 'When a GP arrived to see her, she was absolutely hysterical. She was sobbing, completely terrified. She can only cope with me and her sister.'
To make sense of life within an episode, Imaarl will follow a repetitive routine when she’s awake.
She watches movies on repeat and eats the same food constantly, while Kerry and Shahnequa ensure Imaarl eats properly and stays hydrated.
'Last time it was Wotsits and McDonalds,' says Imaarl. 'It must be the only way I can make sense of what’s happening. It’s the only thing I have control over.
In December 2012, Imaarl graduated from Goldsmiths, University of London with a degree in Psychology.
Kerry added: 'She did amazingly well to get through it in the end. We’re all really proud of her.'
A month later and Imaarl was hit with an episode that lasted two months, between January and March.
Imaarl said: 'I¿m a happy person in everyday life and I don¿t want KLS to overtake me. I¿m not sure about the future, but I want to stay positive'
'For two years I hadn’t suffered a significant episode,' Imaarl said. 'I thought it might have been over.
'It can be depressing, because I have no control over the condition and there’s no effective treatment or cure.
'I’m a happy person in everyday life and I don’t want KLS to overtake me. I’m not sure about the future, but I want to stay positive.
Dr Guy Leschziner, Consultant Neurologist and Sleep Physician at Guy’s and St Thomas’ Hospital in London, said: 'KLS is a very rare neurological disorder characterised by recurrent episodes of profound sleepiness, typically lasting days or weeks.
'The typical picture is that of a young teenager, who becomes confused, has pathological eating to excess and sometimes aggression or other personality changes during these episodes.
'The condition can be potentially devastating, as it can ruin young people’s social, educational and social lives.
'The cause is unknown; there may be a genetic or autoimmune component to it, but this is at present very speculative.
'It remains unclear whether KLS is one disease or other are a number of slightly different conditions that have common features.
'As the disease is very rare, even experts will have seen relatively small numbers of patients.'
For more information about Kleine Levin Syndrome, visit KLS Support UK at www.kls-support.org.uk.
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