The teenager who sleeps for 10 days

 While most teenagers struggle to get out of bed in a morning, Louisa Ball might take 10 days to fully wake from her slumber, due to a very rare neurological disorder. So what's it like living with Kleine-Levin Syndrome?

Louisa has slept through holidays, friends' birthdays and half of her GCSEs.

In 2008, aged 14, she had been suffering from flu-like symptoms. She was at her school in Sussex when she started nodding off in class and behaving strangely.

"I didn't know what I was doing, what I was saying, everyone thought 'hey this isn't right,'" she recalls.
"I was hallucinating and after that I don't remember anything. All of a sudden it just went blank and I just slept for 10 days. I woke up and I was fine again."

Her parents Rick and Lottie watched their daughter becoming fidgety and with unusual facial expressions as she sank into sleep. The first time was a frightening experience for them, although Louisa herself says she wasn't scared by the episode, more puzzled.

"It was really weird, no one knew what was wrong, we just thought it wasn't going to happen again. And then four weeks later it happened again."

She was finally diagnosed with Kleine-Levin Syndrome (KLS). There is no known cause or cure but Louisa says it was good to know what it was and that it wasn't life threatening.

The average time it takes to diagnose the condition is four years, because there is no test and so it requires a process of elimination of other disorders.

The disease was named after Willi Kleine, a neurologist from Frankfurt, and Max Levin, a psychiatrist from New York, who identified patients with similar symptoms in 1925 and 1936.

Louisa is unusual as KLS usually affects teenage boys, who can also exhibit hypersexuality and inappropriate behaviour.
As well as excessive sleeping, symptoms include behaviour changes, irritability, feeling in a dream-like state and binge eating, symptoms that can be mistaken for normal teenage behaviour. There are no drugs that have conclusively shown to alleviate symptoms.

'No dreams'

People with the sleep disorder narcolepsy fall asleep immediately, but people with KLS might sleep more and more over a number of days before falling into sleep mode.

Louisa says she remembers very little when she wakes up from an episode: "It's just blank - no dreams. Now I'll remember a lot more that's gone on. Before I wouldn't remember anything at all. My dad thinks my brain is learning to cope with it more."

So how do you deal with a disorder that takes over your life so much?

It nearly ruined Louisa's career ambitions, because she slept through most of her GCSEs but her college allowed her to enrol and she is studying sport performance and excellence, with dreams of being a dancer.
At first, her school teachers didn't understand, she says. "They'd give work to my brother for me to do and when I went back to school they expected me to have done it but I'd have slept for 10 days."

Some people with KLS have complained they have lost their friends because they suddenly disappear for weeks on end but Louisa has a close knit group of girlfriends. Some even visit her when she's sleeping, just to check she's ok.

When she wakes up, it takes her a few days to fully come round, and her body is quite stiff so her dancing is affected for while.

"I've never really got upset about it but I sometimes do think 'why me', because I've always been a normal healthy person. But all of a sudden it happened and there's no reason why it happened and that sometimes frustrates me.

"But I've got used to it now and learnt to live with it. I'm a special kid."
The change in behaviour before and during a sleep episode is one of the most upsetting things for Louisa's parents, who take it in turns to remain with her. Doctors have told the family it's crucial to wake Louisa once a day to feed her and get her to the bathroom.

But Lottie admits it can take a while to get her to come round. "I've tried before to literally force her to wake up but she just starts swearing and gets so agitated and aggressive."
After watching a video the family made of her while sleeping, Louisa says: "I look scary, it doesn't look like me, it's like I'm on drugs."

Frustrated by the lack of information in the UK, Louisa was taken by her parents to the Hospital Pitié-Salpétrière in Paris, where researchers are looking into whether it is caused by a defective gene.

Many sufferers have abnormalities in their temporal lobe, the area of the brain involved in behaviour and memory. A scan of Louisa's brain function revealed she does have abnormalities in her frontal lobe but there are no signs that this has affected her behaviour or memory.
The good news is the disease can also disappear just as suddenly as it came on. This normally happens after 10 to 15 years.

But Louisa is currently going through a good period. She was out doing Christmas shopping with her best friend this week and has not had an episode in 13 weeks. A few weeks ago she won yet another dance competition.

"It's almost as if I've forgotten about it because I haven't had one in so long."
Louisa's parents, however, are still watching her constantly for signs she could be heading into a sleep state.
"It's weird - now I've left school I haven't actually had an episode, they probably think I was faking it," she jokes.

What is Kleine-Levin Syndrome?


KLS is a disease of adolescence, and sometimes will begin after infection or illness, says Tom Rico of the Center for Narcolepsy & KLS Research at Stanford University, California.
"An individual with KLS will have sleep episodes, typically lasting between one and three weeks, with coinciding cognitive disturbance in the few hours of wakefulness.
"During this time period, a patient will sleep anywhere between 16 to 22 hours a day, every day, until the conclusion of the episode."
But the excessive sleeping is only half the problem, he says, because when awake during the episode, patients experience what they describe as a "dream-like state".

Source: Frances CroninBBC News

Indian village bans mobiles for unwed women

LUCKNOW - A northern Indian village has banned unmarried women from using cell phones for fear they will arrange forbidden marriages that are often punished by death, a local official said Wednesday.

The Lank village council decided unmarried boys could use mobile phones, but only under parental supervision, council member Satish Tyagi said. Local women's rights group criticized the measure as backward and unfair.

Marriages between members of the same clan are forbidden under Hindu custom in some parts of north India, where unions are traditionally arranged by families. In conservative rural areas, families sometimes mete out extreme punishments, including so-called honor killings, for those who violate marriage taboos. In some cases, village councils themselves have ordered the punishments, though police often intervene to stop them.

The Lank village council feared young men and women were secretly calling one another to arrange forbidden elopements.

Last month, 34 couples eloped in Muzaffarnagar district, where Lank is located in the northern state of Uttar Pradesh, police said. Among the couples who eloped, eight honor killings have been reported in the last month, police said.

"Three girls were beheaded by the male members of their family after they eloped" with boys from their same clan, said police assistant director general Brij Lal in the state capital of Lucknow.

Rulings by village councils — called panchayats and comprised of village elders selected by the community — are not legally binding in India, but are seen as the will of the local community, and those who flout them risk being ostracized. In Uttar Pradesh, panchayats are particularly powerful and have declared that boys and girls of the same clan are essentially siblings.

The cell phone ban for unmarried women is part of a wider, regional effort to curb intraclan marriage among the 3 million population of western Uttar Pradesh, Tyagi said. The Lank council ruling, which applies to around 50,000 people, is being considered by councils in the nearby villages.

"The village council members feel that cell phones helped in elopement of young couples," he said by cell phone from Muzaffarnagar.

The conflict is relatively new for the Indian region, where most marriages are still arranged by the parents, sometimes without the couple meeting before the wedding.

But young people are mingling more these days, with more women in schools and offices and increased access to the Internet, cybercafes and social networking sites. They are also watching more Western TV shows that focus on independence and individuality, sociologists say.

Cell phones, meanwhile, have become so common and affordable that even city slum dwellers, rural day laborers and children have them. Across the nation of 1.2 billion, there were more than 670 million cell phone connections as of August, with the number growing by nearly 20 million a month, according to government figures.

The local women's rights group Disha said banning cell phone use over sexual politics demonstrated the councils' archaic mindset, and warned it could put girls at a disadvantage in other areas of life.

"These help in easy communication, which in turn help these youth to get jobs. One cannot discriminate use of these contraptions on basis of sex," Disha president K.N. Tiwari said.

Copyright © 2010 The Associated Press. All rights reserved. The information contained in the AP News report may not be published, broadcast, rewritten or redistributed without the prior
written authority of The Associated Press.

Could you stay silent for eight days?

By Alex Hudson
BBC News


Turn off your mobile phone.

Switch off the television, forget about checking your computer (after reading this article of course), turn off the hi-fi, shut the windows and stop the dishwasher and the washing machine for a moment.

What do you hear?

Nothing? How uncomfortable has that made you feel?

From the noise of the text message alert to the Skype conversation, modern communication tools have made switching off nearly impossible. It seems as though every minute of every day is spent catching up with what other people are doing.

As an example, there are 130 working mobiles for every 100 people in the UK.

And the world seems to just be getting louder. Research done by Sheffield Hallam University showed that Sheffield City Centre was twice as loud in 2001 as it was in 1991.

When outside, the roads are getting busier - 3.5m more people are expected to own driving licences by 2020 according to the Department for Transport - and for those using public transport each evening, the rail traveller is told exactly where the train is destined for at each station, while the sound of someone else's music player invades the quiet of the carriage between stops.

There seems to be no escape.

Maybe then, it is no surprise that some people want to get away. Five people volunteered to be sent to a Jesuit retreat for eight days where they agreed to remain entirely silent except for a meeting lasting one hour each day.

"If you go back 200 years into a rural society, people would see being quiet as normal. Now, it's as if people have acquired an aversion to silence," says Father Christopher Jamison, who organises retreats at Worth Abbey in West Sussex.

"There's an element of fear about missing something if we're not plugged in."

And Father Christopher says it is a different world from the days before television and radio news when people had to wait for the morning paper to find out the news.

The volunteers were taken first to Worth Abbey for a weekend of reflection before being taken to the St Beuno's Jesuit Spirituality Centre in north Wales.

So who would choose to cut themselves off from the world?

"I worked in the media for 15 years, and was this television junkie," says Jon Treanor, one of the people taking part.
Twice-divorced Jon is 55 years old and runs his own business consultancy company. He rarely spent time on his own and was, in his own words, "anti-religious" when he started the project.

"The whole thing is frightening to start with, daunting and sometimes boring but it's like coming off a drug, coming down from something and you have to get used to it."

Noisy neighbours


Silence has for so long been linked to some form of spirituality - space which allows deeper thinking and reflection. Certain orders of monks show dedication to their faith by taking vows of silence. Other orders, such as Trappist monks, are discouraged from "idle chatter" and will only speak when it is deemed necessary.
At the retreat, absolutely no talking is allowed except for a one-hour counselling session a day, and recording a short diary on tape.

Perhaps understandably, with the increase in noise, more and more people are finding themselves on the receiving end of noise pollution.

According to a recent study by Electrolux, 10 million people in Europe move home each year because of problems with noise.

"I worked in the media for 15 years, and was this television junkie," says Jon Treanor, one of the people taking part.

Twice-divorced Jon is 55 years old and runs his own business consultancy company. He rarely spent time on his own and was, in his own words, "anti-religious" when he started the project.

"The whole thing is frightening to start with, daunting and sometimes boring but it's like coming off a drug, coming down from something and you have to get used to it."

cut ourselves off from," he says,

"When we go into silence, it can be very frightening because we find the darker side of ourselves."
But recent studies suggest that noise could even be dangerous, increasing stress levels and risk of illness - the word "noise" does derive from the Latin "nausea" after all.

German research from the Federal Environmental Agency indicates that traffic noise alone is responsible for 3% of all heart attacks each year.

Brian Kristensen, of the Danish Environmental Protection Agency, estimates that between 200 and 500 premature deaths each year in Denmark are due to noise.

This has led to the EU Environmental Noise Directive and the World Health Organisation developing guidelines for night noise. It is serious stuff.

Even in the music charts, a push for silence is gathering pace. The annual race for the Christmas number one could this year have John Cage's silent composition 4'33" among the running, with the help of a Facebook campaign.

But away from the musical politics, and the fiscal and health benefits, the volunteers went through a rather different transformation.

"From my point of view, stepping out of noise is just the most amazing experience you could possibly have," says Jon.

"I think, never mind the money it costs to the economy, it's what it does to you personally in your growth. It's about what happens to you as an individual that's absolutely huge.
"You grow spiritually, you have to face yourself. You have to face who you really are and that can be quite a shock."

And while Father Christopher believes it is difficult to maintain the same level of tranquillity in everyday life - he feels he's "cheating somewhat" by living in a monastery - the volunteers have been changed by the experience.

"I was left with this overwhelming feeling of strength," says Carrie.
"I felt absolutely fearless and by the end of it, none of us wanted to leave. I wanted to keep it and didn't want noise to destroy things all over again."

You can turn your phone on again now.