Sleeping Beauty

That’s real-life Sleeping Beauty Louisa Ball, and her story is no fairy tale.  In case you didn’t hear her story on NBC’s Today Show, here it is:

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, says that the girl had flulike symptoms just over a year ago. Shortly afterward, she had her first bout of extended sleeping.

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 didn’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 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,”

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