Rare illness turns girl, 15, into ‘sleeping beauty’

When 15-year-old Louisa Ball takes a nap, she doesn’t mess around. She sleeps for days on end, and no amount of shaking or prodding can fully wake her up.

The British girl has a rare condition called Sleeping Beauty Sickness, but there’s no Prince Charming on the way to rescue her. Doctors don’t know what causes it or how to cure it — only that it strikes teenagers and goes away by itself after eight to 12 years.

Until it goes away, life is groggy ever after.

Louisa’s mum, Lottie, told NBC News that the girl had flulike symptoms just over a year ago. Shortly afterward, she had her first bout of extended sleeping.

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A 13-day nap
She was eventually diagnosed with Kleine-Levin Syndrome, whose victims worldwide may number no more than 1,000. The victims live normally for weeks or months at a time, with normal sleep patterns and normal energy levels. Then, with little warning, they’ll go to sleep for days or weeks at a time. So far, Louisa’s longest bout in bed has been 13 days.

Victims will wake briefly, but be disoriented and not fully alert. Louisa’s parents force her awake so she can use the bathroom and eat.

Lottie Ball recalled her daughter’s first episode. “We couldn’t wake her up,” she told NBC News for a report that aired Friday on TODAY. “It was just really constant ‘Louisa, will you get up, please. Have something to eat.’ She couldn’t have the energy to just open her eyelids.”

Now, Louisa’s friends can tell when a bout is coming on. She stops talking and she may be irritable. That’s when she knows she has to get home to her bed.

Louisa has slept through family vacations, the dance recitals she loves to perform in, school tests and big chunks of her social life. When she finally snaps out of an episode, her friends fill her in on what she missed, but it becomes increasingly difficult to catch up on missed schoolwork.

When she’s out, Lottie said, it’s as if she’s not there at all.

“She doesn’t cuddle you. She doesn’t talk to you,” the distraught mother said.

No treatment
Medical science is at a loss to treat the syndrome, according to Dr. Emmanuel Mignot, who is director of the Center for Narcolepsy at Stanford University. Mignot joined TODAY’s Matt Lauer to talk about Louisa and Kleine-Levin.

Mignot said it’s possible the syndrome is set off by a viral infection that for some reason affects a teenager’s sleep center and lingers for years.

“We think that some people are genetically predisposed to having an infection that then doesn’t clear up and seems to relapse regularly, and that gives the symptoms of sleeping all the time for days at a time,” Mignot said.

But just as doctors don’t know the cause, they also don’t know why it ends as mysteriously as it began.

“That’s why we have to do a lot more research in this relatively rare disease. There’s only probably a few thousand people with the disorder. They often don’t get noticed, and there’s very little research being done,” Mignot told Lauer. “I believe the infectious process probably gets less active with time and you outgrow it.”

Even the timing of episodes is impossible to predict.

“That’s a big problem. We never know,” Mignot explained. “Sometimes it can be two weeks; sometimes it can be months. Occasionally people say, ‘That’s it; I’ve grown out of it because I haven’t had an episode for a year.’ And then it restarts.”

Not narcolepsy
The syndrome is unrelated to narcolepsy, whose victims are constantly tired and drop off for brief periods of sleep at any time.

“It’s completely different,” Mignot said. “Narcolepsy patients, they just sleep all the time, and they have difficulty staying awake. It’s a lifetime disorder. Once you have narcolepsy, you have it for life, whereas here, it’s episodic. It’s on, off, on, off. And that’s what’s really dramatic.”

It’s so dramatic that some people have accused Louisa of faking the symptoms to get attention. Her father, Richard, thinks that’s absurd.

“This is somebody who’s losing a third of her life to sleep for no reason of her own,” he said.

“I’m so upset about having this illness,” Louisa told a British newspaper. “I know there’s so much I’m missing out on.”

© 2012 MSNBC Interactive.  Reprints