Rare Disorder Causes Teens to Sleep 23 Hours a Day

July 26, 2006 — -- Arielle Farber is a virtual prisoner in her own bedroom.

She is trapped there sometimes by a mysterious condition that makes her need to sleep for weeks -- sometimes months -- at a time.

"She has been in bed, for almost four years out of the last 12," said Varda Farber, Arielle's mother.

Arielle Farber has Kleine-Levin Syndrome, a rare neurological disorder that affects basic human needs, primarily a person's urge to sleep.

KLS sufferers feel a need to sleep excessively. As long as KLS sufferers remain in their state of sleep, their sense of time and memory are lost.

Arielle Farber first began showing signs of KLS in 1994, when she returned home to Boston from summer camp and headed straight to bed and stayed there, sleeping almost 23 hours a day.

In the only hour she was awake, her parents said, she acted strangely and seemed confused, reverting to almost childlike behavior.

"We had no idea what she was sick with," said Neal Farber, Arielle's father. "We assumed it was something viral, something bizarre related to maybe in camp."

Then, a week later, Arielle's strange behavior stopped just as suddenly as it had started. The reprieve, however, did not last long.

Six months later, her teenage brother Dani began showing the same strange symptoms, sleeping excessively.

"Twenty-two hours a day is. … I would classify that as almost a 'hibernation,'" Dani said.

Dani Farber underwent several tests, and puzzled doctors could not determine what caused his symptoms.

"We went through all the battery of tests, through EGs and NMRs," Neal Farber said. "They'll try to rule out all of the things that they think about. Is it something related to seizures, brain tumor?"

The Farbers also visited a psychiatrist, who found nothing wrong with Dani.

"Within that first episode, we also went to a psychiatrist," Varda Farber said. "He said, 'There's nothing wrong with [Dani].'"

Mike Rancurello, a pediatric psychiatrist, was also puzzled when another teenage boy came into his unit showing the same symptoms as the Farber teens.

The case was still open a year later, when Rancurello came upon a medical article about KLS.

Both Dani and Arielle Farber were stricken with KLS when their grandfather died.

"The kids were both sick when their grandfather passed away," Varda Farber said. "Imagine waking up from the illness and finding out your grandpa has died."