PreviousNext

Kleine-Levin: Imaarl Duprey, 23, sleeps for 59 DAYS because of 'Sleeping Beauty' Syndrome

By // Health | Kleine-Levin: Imaarl Duprey, 23, sleeps for 59 DAYS because of 'Sleeping Beauty' Syndrome
Email to a friend Plain text Print version // Font size: Decrease font Enlarge font
  • 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

22

View
comments

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

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.

Imaarl Duprey

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.'

Imaarl Duprey

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.

Imaarl Duprey

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 Duprey

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.

  • - An out-of-control New York City taxi hit a cyclist Tuesday morning beneath the Rockefeller Centre Pictured: British fashion graduate, 23, whose foot was...
  • Chris Lane murderTwo teens 'who shot dead Australian student in the street...
  • Twitter row: A picture of a 17-year-old girl performing a sex act, of which this is a censored version, has been circulated online along with cruel comments about the teenager'Distraught' girl, 17, faces humiliation on the web after...
  • Syria poison gas attackGenocide in Syria as 1,300 people including hundreds of...
  • First pitch for Tae-Mi Best first pitch ever? South Korean actress is latest to...
  • 'All-nighter': Moritz Erhardt, 21, had been working gruelling hours as an intern at an investment bankInvestment bank intern, 21, on £45,000 worked 'until 6am for...
  • Elena ChernyakovaDoctor 'took photos of drunk model, 23, while she was in ER...
  • An SUV with Rhode Island license plates was seen driving past the victims' BMW. Someone inside the SUV fired multiple rounds into the car and then sped off.Handgun used in 2012 double murder tied to NFL star Aaron...
  • Making a splash: The homeowners posted a super-sized note for all their neighbors to see today on the glass shower cubicle in Brooklyn, New YorkCouple who built floor-to-ceiling glass shower put up a...
  • Princess Beatrice (left) walks on a St Tropez beach last month. The royal has quietly left her job at the investment capital firm Busy Bea's summer of non-stop fun: Princess Beatrice quietly...
  • A shooter has been taken into custody after opening fire at an Atlanta-area school and no one was injured at the sceneAtlanta school hero reveals she told shooter she loved him...
  • iPhone photo contestHigh art on a mobile phone: The incredible photographs taken...
Tagged : No tags for this article

Headlines Newsview all

Ebola could hit 15 countries across Africa: Study of how disease has spread in past finds 70million people may be at risk of infection

The Ebola outbreak could hit 15 countries across Africa - putting the lives of 70 million people at risk, a groundbreaking study has found. In a ...

economic ties with China as two countries announce £2.4bn in new commercial deals

Britain is to forge closer economic ties with China after Chancellor George Osborne announced £2.4billion in new commercial deals with the People’s Republic. As the annual ...

Manchester Dogs Home: Public raise over £200,000 in hours after dogs home fire

Donations have poured in for Manchester Dogs’ Home after a fire ripped through the premises, killing more than 53 dogs last night. A JustGiving page set ...

Manchester Dogs' Home: 15-year-old questioned on suspicion of arson attack after blaze kills 40 dogs

A 15-year-old boy is being questioned on suspicion of arson after a blaze at Manchester Dogs' Home which killed more than 40 dogs. Firefighters were called ...

Oscar Pistorius braced for verdict in Reeva Steenkamp murder trial

The judge in the Oscar Pistorius murder trial has started delivering her long-awaited verdict in a case that has gripped the world - a decision ...

Airline passenger was accidentally given suitcase full of plastic EXPLOSIVES left at Sydney airport by the AFP a month ago... then took them home 

A woman got more than what she bargained for when she was given a replacement suitcase at Sydney airport after her luggage was damaged on ...

I'm convinced Oscar Pistorius is innocent, says journalist to have spent time with the time athlete during his murder trial

Mark Williams-Thomas believes athlete shot Reeva Steenkamp by mistake Reporter says he has spoken to Paralympian and his family in 'real detail' He says double-amputee is a ...

Royal baby hoax hospital staff wanted to discipline nurse Jacintha Saldanha

An Australian DJ has made a face-to-face apology to the family of a nurse who killed herself after she put her through to the Duchess of ... Full story

Trainee teacher hangs himself after split from the girlfriend he couldn’t live without

A trainee teacher hanged himself on New Year’s Eve after a split from his girlfriend, an inquest heard today. Keiran Walsh, 22, split from his partner ... Full story

White Dee, Benefits Street's most infamous and shameless resident

Late on a dark and rainy night, it is all go-go-go down at White Dee’s house in Birmingham. There is a pan of fish stew ... Full story

DJ Chris Moyles claimed to be a second-hand CAR DEALER to save £1 million in celebrity tax avoidance scheme

DJ Chris Moyles claimed to be a second-hand car dealer while presenting Radio 1’s Breakfast Show in a bid to save up to £1million in ... Full story

Comment on: Kleine-Levin: Imaarl Duprey, 23, sleeps for 59 DAYS because of 'Sleeping Beauty' Syndrome

Rate this article

0

Breaking News

British Imams take to YouTube to warn Isis terrorists that kidnap and threatened murder of British taxi driver Alan Henning is against Sharia Law 

Muslim scholars call for release of kidnapped Alan Henning in YouTube pleaDescribe threats to murder taxi driver as 'totally prohibited' under Sharia lawThe 47-year-old appeared ...

So much for a dry weekend! Brits trapped in cars and underground after more flash flooding overnight ... but d forecasters STILL say it will clear up

Drivers in Essex had to be rescued from their cars as sudden torrential downpour flooded area last night Three men and a woman were trapped in ...

George the cockatoo found safe and sound after he was birdnapped from a Sydney pub that he's called home for almost 10 years

George the cockatoo was taken away by a brazen thief at a Sydney hotelThe brazen thief dropped by the pub and was 'friending' him ...

Gang who stole £200,000 Audis to strip for parts jailed after their sophisticated car cutting den was raided by police

Akhtar Zamir, Khuram Razaq and Nakash Javaid took four cars in five daysMechanics Thomas Winkett and Wayne Williams dismantled them for partsThey took two Audi ...

Glasgow 'riots': Footage shows Yes and No voters in running street battles in disorder after pro-Union rally

Footage has emerged of violent scenes in Glasgow as police struggled to contain a pro-Union rally that broke down into disorder in the city centre ...

UK weather: Thunder, lightning and flash floods hit south of England

The driest September in over 50 years came to an abrupt end this weekend, as thundery storms saw parts of Britain waking up to flash ...

Record-high auction rates soar and property prices rise as Sydney home sells for $2.3 million on a huge day of Spring sales

This house in Sydney's north sold before Auction for $2.3 million The property opened for inspection and was snapped up immediatelyIt was $300,000 above the price the ...

We cant turn away from these hideous acts Foreign Minister Julie Bishop tells UNs security council that taking action against IS terrorists is now a matter of conscience

Foreign ministers attend a U.N Security Council session in New York to discuss action against IS terrorists Julie Bishop said the 'murderous terrorist organisation' is a ...

Giant scary robot monster bird to protect Sydney Opera House from marauding seagulls

In a bid to keep gulls from scavenging, management is currently trialling a giant mechanical birdThe giant mechanical bird is reported at a cost of ...

UK Imams call on 'immediate and unconditional' release of Alan Henning from hands of Isis

Three prominent Muslim Imams and Islamic scholars have made an impassioned video appeal to the Islamic State (Isis) calling on the immediate and unconditional release ...