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Kleine-levin Syndrome, a Rare Disease That Makes “Sleeping Beauty” a Harsh Reality

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While many of us dream of a few extra hours’ sleep due to the pressures of work and family, such an idea is the stuff of nightmares for some people. This is due to an extremely rare illness known as Kleine-Levin syndrome.

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It was first described in 1786  by  Edmé Pierre Chauvot de Beauchêne, a French Physician who specialized in women’s disease. In his description about the first recorded case of the ailment, a woman 26 years old, who came to Paris two years earlier,

In her fourteenth year, she was overcome with a lethargic sleep which lasted several days, and it was so profound that she was believed dead. From that point forward, the affection of sleep recurred at regular intervals; it usually lasted eight to ten days, continuing at times for fifteen; and upon one sole occasion. It persisted into the seventeenth day.

The disorder was already described as earlier stated but not named until 1962 by a British Royal Navy physician named Critchley. It was derived from Willi Kleine who described a series of nine cases of recurrent hypersomnia in 1925 and Max Levin who added a series of five other cases, focusing on the relationship between hypersomnia and disturbed eating in 1936.

What does Kleine-Levin syndrome mean?

Kleine-Levin syndrome (KLS) or also known as ‘Sleeping beauty syndrome’ is a rare disorder characterised by consistent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour (mood changes).

What causes it?

Unfortunately, the cause is still unknown. But there are speculations that an episode of KLS is often triggered by an infection or sometimes by head injury, alcohol intake or sleep deprivation.

Researchers are looking into genetic, auto-immune, inflammatory or metabolic involvement. Contact with KLS individuals cannot pass on the condition.

What are the symptoms of KLS?

Symptoms vary between individuals with KLS but the following first 4 symptoms are always present during an episode

Hypersomnia (excessive prolonged sleep)

Someone with KLS will “sleep” 15 to 22 hours for days, weeks or even months. They feel and look exhausted. Sleep may be disturbed.

Cognitive impairment

They experience confusion, reduced understanding and feel in a dreamlike state (derealisation). They cannot concentrate, have difficulty communicating, speaking and reading and do not remember events after an episode.

Altered behaviour

Their demeanour is altered so that they appear spaced out or childlike. They are affected by apathy, are uncommunicative and may engage in automatic and repetitive behaviour. Teenagers will stop normal activities such as using mobile phones, seeing friends and showering and may listen to the same music or watch the same programme repeatedly

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Hyperphagia (Excessive eating)

Sometimes those with KLS eat compulsively and mechanically during a bout and have food cravings for sweets, snacks or foods they would not normally eat. Some eat less.

According to Edmé Pierre Chauvot de Beauchêne’s report about his KLS patient,

During the first years of her disease, this girl had appetites as bizarre as they were dangerous, causing her to eat lime, plaster, soil and vinegar. Thereafter these appetites subsided, and she nourished herself indiscriminately with all sorts of aliment, excepting bread, for which she maintained an insuperable loathing till she was perfectly cured. This food always occasioned vomiting.

Other symptoms

Some individuals, generally boys, experience hypersexuality or other disinhibited behaviour. Some experience migraine headaches with hypersensitivity to noise and light. If they are not in their home environment then some may become anxious, aggressive or irritable particularly if prevented from sleeping. Some have autonomic symptoms including disturbed body temperature control, and altered blood pressure and heart rate. Some may have hallucinations and delusions in some bouts. Towards the end of an episode some get depressed and some experience elation and insomnia for 1 to 3 days afterwards.

 Is there a cure?

As earlier stated above, there is no known cure. Dr Guy Leschziner, a consultant neurologist at Guy’s Hospital in London said the condition ‘burns out’ after a number of years and on average it goes on for about 13 years.

In some case reports, lithium has been reported to decrease the length of episodes and the severity of their symptoms and to increase the time between episodes. It has been reported to be effective in about 25 to 60 percent of cases. Its use carries the risk of side effects in the thyroid or kidneys.

But the most recommended treatment for it is watchful waiting at home by loved ones.

General facts and figures

People who actually had the condition

1. Louisa Ball

Louisa Ball, 13 years old as at 2008, was just recovering from a bout of flu before the rounds of endless sleep became a source of worry. It was not until 2010 that she was confirmed as having KLS. As at then she was sleeping for about 10 days straight and sometimes 22 hours of which her parents would wake her for food and use the toilet.

2. Helen Waterson

She was finally told she had KLS in 2010 after being misdiagnosed several times. On the fact of being nicknamed “Real-life sleeping beauty”, she said,

“At least in the fairytale she got to wake from her sleep,”

“I go through life either sleeping or feeling like I’m sleepwalking. I’ve missed all the important moments of my life.”

“I don’t have a social life; I don’t have a love life. With this illness you don’t live, you just exist.”

The Mirror asked her about  her future since she is confirmed to having KLS, she said,

When she was asked by The Mirror  about how she copes with KLS and her future, she said,

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“I am constantly in pain and most of the time too exhausted and stiff to move. I can’t expect anyone to want to be in a relationship with someone like that.

“I really miss the companionship and I’d love to be a bride one day, but I can’t get married without a man.

“I’ve accepted being by myself because I feel I’ve been by myself in one way or another my whole life.

“Unlike the fairytale, I won’t be getting a happily ever after.”

3. Nicole Delien

During an episode she reports sleeping for about 18 to 19 hours. She once slept for 64 days from Thanksgiving into January — her longest sleeping episode yet.

Her family said medication helped spread Nicole’s sleeping episodes further apart. Nicole missed out on Thanksgiving, Christmas, birthdays and her family’s first trip to Disney World, due to her condition.

She also missed out on an opportunity to meet pop singer Katy Perry. But when Perry later learned about Nicole’s disorder she made sure Nicole was able to visit her backstage at a performance in Connecticut.

4. Beth Goodier

For during episodes of her extremely rare illness, which can last for weeks, Beth Goodier is awake for only two hours a day.

During her episodes which may last for weeks, Beth is only awake for two hours a day.

On the rare illness, she said

 “It’s nothing beautiful, it’s nothing romantic, it’s horrible.”

But during the periods when she is well, she uses her time to blog about KLS and express herself through YouTube videos.

“I want to be able to do something productive in the time when I’m well… to be productive for society,” she tells BBC Inside Out North West.

Beth is entirely dependent on her mum, Janine, who had to give up work to care for her.

KLS Support UK and KLS Foundation aims to raise awareness, help those affected, and support medical research with the hope of better understanding the causes and treatment of the condition.

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Disclaimer: This health-related material is provided for information purposes only. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.

NOTE: If you know more about the condition, you can update us in the comments

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