Sleeping Away Their Youth
October 13, 2006, Cleveland Jewish News
Arielle and Dani Farber both suffer with KLS. There is currently no treatment or cure. Jews may have proclivity for Kleine-Levin Syndrome, a rare neurological disorder
BY: JENNIFER SLATE GRISCHKAN, Special to the CJN
The past few months were supposed to be filled with exciting activity for 24-year-old Arielle Farber.
The Newton, Mass., native planned to travel to Israel over the summer then start graduate school at George Washington University in the fall. She was also going to be a bridesmaid and sign the ketubah (marriage contract) at her best friend’s August wedding.
But, like so many other times in her young life, Arielle missed these milestone events Š because she was asleep.
The notion of a long, “enchanted” sleep has been romanticized in literature and the movies – think Sleeping Beauty, Rip Van Winkle and Brigadoon. But for Arielle and her brother Dani, 27, prolonged sleep has been a real life nightmare.
The Farbers suffer from Kleine-Levin Syndrome (KLS), an extremely rare neurological disorder characterized by long episodes of sleep, often 20-23 hours a day for weeks at a time. A disorder generally diagnosed in adolescence, there is currently no treatment or cure. KLS is not fatal, however, and studies indicate that episodes tend to become less frequent as patients age.
Dani, an equity trader in New York City, has been healthy for three years. Despite his long battle with KLS (he was diagnosed 15 years ago), he has been reluctant to discuss the disease.
But now that his sister has been in bed with a KLS episode for over a year, Dani says he feels “more and more helpless.” He has finally decided to speak out about his experiences with KLS. His parents, Varda and Neal, are also going public about how the disease has affected their lives.
The Farbers’ first experience with KLS occurred in 1994 when Arielle returned from overnight camp. She was exhausted and had some flu-like symptoms, but that didn’t seem unusual since children are often tired or sick when they return from camp, says Varda. “After a few days (of Arielle’s sleeping), we were concerned, but we didn’t know then what we know now.”
Exactly six months later, Dani became sick with flu-like symptoms, and he began to sleep for hours at a time. He quickly rebounded, but the next month he experienced a second episode.
“He was sick every 2-3 weeks,” Varda recalls, “Each episode lasted a week to 12 days.
”Dani describes KLS as having two defining characteristics; hypersomnia and disorienting perceptions when awake.
“You’re unaware of the passage of time,” he explains. When he was awake during an episode, he would feel as though “everything was out of focus. It’s a very frightening experience.”
The Farbers sought answers from many specialists but finally received a diagnosis of KLS “by chance.” Their puzzled neurologist had called a colleague who, coincidentally, had written a description of KLS for a medical school textbook.
Over the last 15 years, the Farber children have experienced over 45-50 KLS episodes. Varda has often put her life on hold to care for them. More recently, the Farbers sadly “dismantled Arielle’s life piece by piece” when she was unable to begin graduate school.
The Farbers have helped establish the KLS Foundation to educate families and doctors regarding proper diagnosis and to support those with the disease. Its mission is to raise awareness and generate funding for research to discover KLS’s cause and to find a cure.
Because KLS is an orphan disease (a disease affecting fewer than 200,000 patients in the US), it is difficult to attract researchers.
However, the KLS Foundation was fortunate to attract the attention of Prof. Emmanuel Mignot, a narcolepsy expert who has agreed to tackle the research if the KLS Foundation provides initial funding.
The Foundation currently has raised a little over $120,000. They hope to get additional support from the government or the National Institutes of Health, but “we really need some sort of starting point before we can go after those kinds of grants,” Neal says.
One of the most surprising findings of a recent study was the percentage of KLS patients with Jewish heritage – 17%. Jews represent less than 2% of the US population, Neal says, so this statistic seems to be significant.
“There was a cluster of cases in Israel,” he adds. “There may be some kind of predisposing factor explaining why Jews are getting this, although KLS is not a Jewish genetic disease.”
The Farbers know that there is a long way to go toward finding a cure, but they are committed to their cause.
“This is a disease you don’t ‘see’ on children because when they are sick, they are at home,” says Varda. “Thank G-d it’s not life threatening, but it is totally life-altering.”
Editor’s Note: As this article went to press, Varda Farber wrote us, ecstatic that after 15 months, Arielle has just emerged from her recent KLS episode. For more information about KLS, go to http://www.klsfoundation.org.