Rare Syndrome Turns British Woman Into 'Sleeping Beauty'

July 14, 2011— -- In the fairy tale, Sleeping Beauty is a princess sent into a 100-year slumber by an evil witch. A kiss from a handsome prince breaks the spell, and they live happily ever after.

The present-day "Sleeping Beauty," as the media calls her, is a 17-year-old woman in Worthing, England, named Louisa Ball. Instead of the fairy tale's poisoned splinter, her curse began with flu-like symptoms two years ago.

"Bad cold, temperature ... and from then on that's when I started to sleep," she said.

She wouldn't stop for 10 to 14 days.

Her parents would rouse her for bathroom breaks and ravenous feedings.

"She'd go through a whole packet of biscuits, or ... five or six packets of crisps -- anything that she could get her hands on," said her father, Rick Ball. "It was a case of almost like a hamster hibernating, and the food would get stuffed in. And you'd have to step in and say, 'Whoa, that's enough.'"

Her mother, Lottie Ball, added, "I asked to see a dietician ... because I was concerned when Louisa was in an episode that, you know, she is missing out on all the goodness."

The advice she got was to give Louisa smoothies, which gave her food and fluid at the same time.

Even so, Louisa would lose as much as 10 pounds during a sleep episode. Even odder than her eating habits was her behavior, which featured offensive, almost primal, mood swings.

"They're horrible. They're scary, it's like a different child," said Lottie Ball.

The parents knew a sleep episode was coming when their otherwise sweet-natured daughter would snap at others inappropriately.

"When she's up and she's confrontational, those were the scarier moments," Rick Ball said.

The year before college, Louisa slept for a solid week every month. She missed weeks of school and fell behind in her beloved dance classes.

"I missed my end-of-school exams, obviously, because I was in an episode," she said. "I've missed, like, family holidays, birthdays and parties."

The doctors were as baffled as Louisa's parents.

"To see all the various medical professionals and not get any answers ... it was pretty frustrating," said Rick Ball. "Everything goes through your mind, and you wonder whether or not she has taken a drug."

Then came a breakthrough, courtesy of a consultant in London to whom the family was referred.

"I always refer to it as the 'Champagne and hangover' moment," said Rick Ball, "because we went in there and the good news was, 'I think I know what's wrong with your daughter.' And the bad news was, 'There's no cure.'"

Louisa was diagnosed with Kleine-Levin Syndrome, an incurable autoimmune disorder that some researchers say disrupts the hypothalamus, the part of the brain that regulates appetite, sleep and libido.

KLS more often afflicts males, usually beginning with a virus during adolescence that seems to trigger the sleep and aggressiveness, along with hyper sexuality.

Mood stabilizers like lithium and hormone therapies help those with KLS around the edges, but they don't ward off the extreme sleep.

"[When I wake up] I'm always confused as to what day it is, because I don't know how long I've slept for," Louisa said. "And then when I realize, I'm like, 'Wow, that's a long time!'"

How does she feel when she wakes up?

"Refreshed," she said.

Her sleep episodes have become less frequent. She recently went five months without one. According to experts, KLS sufferers can grow out of it after 10 to 12 years.

As Louisa's story grew in the media, headlines called her "Sleeping Beauty," and KLS is known as Sleeping Beauty syndrome.

If someone cast a spell on Louisa, there must be a handsome prince coming in some form. Romantically speaking, she said there was no prince in her life, at the moment.

The prince could take the form of a cure, and Louisa's family contributes to the KSL Foundation in California to help speed his arrival.

In either case, Lottie Ball said, "We're waiting for the handsome prince."