Media Stories About KLS

NPR’s “This American Life” Show and Podcast

March 15, 2024
“What’d I Miss? Producer Tobin Low finds a group of people [KLS patients and their caregivers] with a special relationship with the idea of catching up.”
Tribal Tribune (Wando High School newspaper; Mount Pleasant, SC)

February 7, 2024
“The morning after a seemingly normal sleepover with her friends, senior Leia Eisen was never the same. … Leia’s mom, Donna Eisen, puts into perspective how limited her time is dealing with monthly hypersomniac episodes. ‘For her, it has meant operating on approximately 20 days a month instead of 30/31. Imagine having 30 percent less time to live your life every month. Imagine every 26-28 days your body shuts itself down no matter how hard you try to fight it off,’ Donna said.”
Sleepopolis

December 13, 2023
“The notion of deep, enchanted sleep has long been romanticized in stories and myths such as Sleeping Beauty and Rip Van Winkle. But for patients diagnosed with Kleine-Levin Syndrome — also known as sleeping beauty syndrome — sleep doesn’t feel like a fairy tale. Fortunately, there are options for those with this syndrome: Between nonprofits that exist to help you live with this sleep syndrome and medical treatments to lessen your symptoms, here’s what to expect and what you can do to improve your sleep.”
The New York Post

October 5, 2023
“I’m a very independent person. I’m very bubbly and outgoing, but when an episode hits I become the complete opposite. I become very childlike. I talk like a baby and I’m needy,” the nurse from Newcastle upon Tyne, England, said. “I’m very dazed. I can’t function because it’s like I’m in a dream. It’s just a dream that you don’t really wake up from.”

The Washington Post

November 19, 2022
“’The hardest thing for me are the things I’ve missed out on,’’ said Erin, a 19-year-old sophomore at the University of Nebraska at Lincoln. They include a high school basketball championship, her 18th birthday, a family Christmas trip to Colorado and the start of her sophomore year of college. Erin slept through them all.”

Newsweek

June 29, 2022

“The syndrome has a prevalence of just one to five in a million people, according to Dr. Guy Leschziner, a professor of sleep medicine at the U.K.’s King’s College in London and a consultant neurologist at Guy’s and St. Thomas’ hospitals. He told Newsweek that its rarity makes it more difficult to study.”

The Patient is In Podcast

May 24, 2021
“Some call it ‘sleeping beauty syndrome.’ Its actual name is Kleine-Levin Syndrome or (KLS). It’s a rare and complex neurological disorder that causes excessive sleepiness. Between episodes, those with KLS appear totally healthy, but when the disorder strikes, a person with KLS can sleep up to 23 hours a day, getting up only to eat and use the bathroom. In this episode, we hear from siblings Dani Farber and Arielle Poleg who both started showing symptoms of KLS as teenagers, which is when the syndrome typically presents. They were the first sibling pair ever known to both have KLS.
‘When I was awake, I had no energy at all. I could barely walk, I couldn’t get up to eat or drink. I didn’t look like myself … probably the most scary part of it all is that I didn’t feel like myself. I was confused, I was disoriented,’ says Dani.”
The New York Times
October 2, 2019
“‘I don’t know what’s going on,’ the 19-year-old exclaimed in a panicked voice as his parents entered the nearly deserted emergency room of a hospital in Eau Claire, Wis. He was a freshman at the university there. A high school friend, now at the university with him, had called them with a strange story. She told them that their son had been uncharacteristically quiet for a couple of days — he had a terrible headache. But that morning, he felt well enough to go with her to pick apples. He had been a little out of it all morning, but suddenly he was totally gone — just standing in the orchard staring into space. He wouldn’t even respond to his name. That’s when she called his mother.”
Today.com
June 24, 2019
KLS caregiver and KLS Foundation Board Member Jenny Grossman writes for Today.com: “There’s nothing beautiful about ‘Sleeping Beauty Disorder,’ as some call it. Cooper has had five episodes since his diagnosis. During an episode, he sleeps 20 hours a day. The episodes usually last for three weeks where he’s basically lost in a hypnotic coma state — he has no clue what’s going on around him. We just let him sleep.”
Huffington Post
February 27, 2017
“When federal government worker, Tara, 30, of South Carolina, USA, first started dating John around nine years ago, she thought he was not interested – because she would contact him and hear nothing back. In reality, he was asleep.”
Teen Vogue
December 2, 2016
“We know fairy tales aren’t real, and it turns out we might not want them to be. According to the Daily Mail, a 22-year-old British woman has what’s known as Sleeping Beauty syndrome — and trust us, it’s not as glamorous as it sounds. Beth Goodier reportedly fell asleep on the couch one day in November and did not wake up for six whole months, save for small food and bathroom breaks. Over the past five years, the Daily Mail says Beth’s mom estimates she’s been asleep 75% of the time, something that obviously derailed her education and career plans.”
The Huffington Post
October 9, 2012
“When Ontario teenager Kaitlyn Terrana is having one of her episodes, she can sleep for 20 hours a day, 10 days at a time. That’s because Terrana has Kleine-Levin Syndrome — sometimes dubbed the ‘Sleeping Beauty’ disorder — that causes her to sleep for long chunks of time, CBC reported.”
Irish Examiner
May 9, 2012
“CLAIRE O’NEILL, 17, will be on a camper-van holiday with her parents this weekend, driving from their home in Bray down the east coast. Her dad mock-groans at the thought of clothes shopping with her, but he is delighted. Time with his daughter is precious. Claire can become disorientated, falling asleep for up to ten days. … She has Kleine Levin syndrome (KLS), or sleeping beauty or Rip Van Winkle syndrome. KLS is a rare neurological disorder, affecting one and two people per million. Often brought on by an infection or the flu, it can cause sufferers, usually adolescent males, to fall asleep for days.”
The Daily Mirror
November 15, 2011
“It should have been the best time of her life, starting ­college, making new friends and hanging out with her ­gorgeous new boyfriend. But this time last year, when Bethany-Rose Goodier went to bed and fell asleep, she didn’t wake up the next day. Or the day after that.”
The Daily Mail
February 10, 2010
“She is known to her family and friends as ‘Sleeping Beauty’ – but her life is no fairytale. Louisa Ball, 15, sleeps for two weeks at a time because she suffers from an incredibly rare disorder. She misses school exams, dance lessons and even missed an entire week’s holiday away with the family as she slept the whole way through.”
West Seattle Herald
December 22, 2008
“Consider falling asleep one night knowing you’re only 17 years old, but when you wake up, you’re two years older. To the average person this may be unimaginable, but for Alanna Wong, a former upcoming tennis star at West Seattle High School, it’s a nightmare turned reality. Alanna has spent almost nine years with a disorder that has plagued her once normal life and left years of her young existence a mystery.”
Discover Magazine
August 14, 2007
“The disease sounds as if it came straight out of Grimms’ fairy tales. Teens fall into a slumber, dozing weeks or even months at a stretch. Marathon sleeping spells come and go, cropping up intermittently for roughly a decade. Then, symptoms vanish as mysteriously as they first appeared. Called Kleine-Levin syndrome, the condition is so rare that only a few cases have been reported in the world medical literature.”
The Daily Mail
February 26, 2007
“She is known to friends and family as the Sleeping Beauty, but Nathalie Hoyland’s life is no fairy tale. Every night when she drifts off into slumber, it might be several mornings later when she wakes up. Miss Hoyland, a 26-year-old youth charity worker, is one of only a handful of Britons to suffer a rare sleep disorder which can cause her to stay in bed for up to a week at a time.”
Cleveland Jewish News
October 13, 2006
“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 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.”

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