GLENN MARKS’S STORY – KLS FOUNDATION NEWSLETTER
Glenn writes: ” I am finally comfortable saying that I grew out of KLS and don’t think about it every day. While KLS shaped my life, it didn’t define it. I am now a practicing attorney and able to live a relatively healthy life. While there are times KLS still creeps up in my thoughts, it is not debilitating like it used to be. When I was in episodes, I could not advocate for myself, so my mom had to speak for me. Now, as an attorney, I get to advocate for those who do not have a voice and make sure they are heard—just like my family did for me.”
Read his story here.
KLS – Article Washington Post Nov 19th, 2020
November 19, 2020, Washingtonpost.com This teenager would sleep for alarming 20-hour stretches – The baffling malady drastically alters her personality and periodically shuts down her life. See article here.
KLS – Article Newsweek Jun 29, 2022
June 29, 2022, newsweek.com Kleine–Levin Syndrome: Sleeping Beauty Disease That Messes with Teen Brains. See article here.
JAMES LONGSTAFFE’S STORY – KLS FOUNDATION NEWSLETTER
James writes: ” During my adolescence, KLS severely impacted me and my family. From the initial maddening period of being undiagnosed, to missing time and important celebrations and the effect on my school education, it was a very difficult period that I felt would surely define my life. Now, after much thought, I’m proud to say KLS impacted but did not define me.”
Read his story here.
NEWS RELEASE: Kleine-Levin Syndrome Foundation Urges Lawmakers to Bring National Awareness to KLS research
Foundation Honors KLS community on Rare Disease Day by lobbying for inclusion in NIH Sleep Research Plan
Feb. 28, 2022 – WASHINGTON: The Kleine-Levin Syndrome Foundation today honors Rare Disease Day by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the National Institutes of Health (NIH) biennial “Sleep Research Plan.” Including KLS in this publication and action plan will help build interest and funding for clinical research about this extremely rare disorder.
Read more here.
LINDSAY FRIEBERG’S KLS STORY – KLS Foundation Newsletter
Lindsay writes: “I am 33, lives in Toronto, has been married for five years and has two beautiful daughters, ages 3.5 and 1.5, a fulfilling career and wonderful friendships. I have reached the point in my life that I no longer think about KLS every day. A week often goes by before I remember to be grateful for my ability to sleep normally, eat normally, and lead a productive, happy and successful adult life. I think in amazement that the ‘new’ friends I have made throughout the last 6.5 years know nothing about this chapter of my life; they have no idea what plagued me for a decade. I never thought I would get to this place.” Read her story here.
KLS – Article Ny Times Oct 2nd, 2019
October 2, 2019, nytimes.com A Mysterious Sleeping Disorder That Turns Life Into a Waking Dream – The New York Times. See article here.
Kaitlyn Terrana’s KLS Story
October 9, 2012, Huffington Post 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. See her article here.
KLS – Article ABC news Feb. 27, 2012
February 27, 2012, ABCNews.com When Eric Haller gets sick and goes into an “episode” — about eight to 10 times a year — he slips into a dreamlike state and is unable to do simple cognitive tasks, like reading, adding up numbers or comprehending his favorite TV shows. See article here.
I missed Christmas and my birthday when I fell asleep for six months
November 15, 2011, by Lauren Taylor, Daily Mirror 15/11/2011 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. See article here.
January 31, 2010, News of the World Pretty Louisa Ball is known to her family and friends as Sleeping Beauty… but there the fairytale ends. See article here.
She lives “Your worst nightmare times 10”
December 25, 2008, West Seattle Herald; By Allison Espiritu 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. See article here.
KLS Featured on Discovery Health Channel on Monday, July 28th
September 9, 2008 Discovery Health Channel’s “Mystery ER” is presenting a program on KLS on Monday, July 28th at 5 p.m., 8 p.m. and 11 p.m. (eastern time). The show will feature Adam and the trials and tribulations his parents, Cindy and Paul endured in finding a diagnosis for their son. Please check your local listings to confirm the time it will air in your area.
Penney fights through illness to play at SHS
March 26, 2008, The Stoneham Independent, March 26, 2008 Imagine that you’re in the prime of your high school life and the picture of health: a talented hockey player and athlete, a hard-working student and someone well-liked and respected by your peers and your teachers. See article here.
KLS: A rare syndrome for which there is no known cure is affecting Ashkenazi families
November 14, 2007, San Diego Jewish World, November 14, 2007
Rip Van Winkle Disease
August 15, 2007, DISCOVER MAGAZINE Science, Technology and the Future 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. See article here.
Newton Rallies Around Family Stricken with Rare Condition
March 29, 2007, The Jewish Advocate
Nightmare of the girl who can’t wake up for a week
February 26, 2007, Daily Mail (UK) She is known to friends and family as the Sleeping Beauty, but Nathalie Hoyland’s life is no fairy tale. See article here.
Sleeping Beauty Syndrome
November 28, 2006, Inside Edition. “Imagine being so exhausted, so overwhelmed, that you could sleep almost non stop for weeks, or even maybe months.” See video below featuring Kristie Brown and the Farber’s.
KLS Report on Inside Edition
Syndrome Can Keep People Asleep for Weeks
November 7, 2006, Local 6 – Orlando, Florida (WKMG TV) A rare syndrome that typically strikes during adolescence can keep sufferers asleep for days, sometime as many as 14 days, according to a Local 6 News report. See article here.
Weekly Reader/Altered State
October 20, 2006, Current Science The abnormal hunger and sleep patterns of people with KLS suggest to Mignot that two areas of the brain–the thalamus and hypothalamus—are affected by the disorder. See article here.
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. See article here.
Rare Illness Makes Some Reluctant Sleeping Beauties
September 20, 2006, CBS Chicago Affiliate
Lancaster Mother Glad to see More Focus on Rare Disorder
September 10, 2006, The Lancaster News Donna White wants to spread awareness about the illness that changed her son’s life seven months prior to his death. See article here.
Medical Mystery: Sleeping Beauty Disorder
July 26, 2006, ABC News – Prime Time Medical Mysteries An ABC television show on KLS with the Farber and Delein families. Kleine-Levin Syndrome sufferers feel a consistent urge to sleep. See video here.
Mother Hopes to Raise Awarness about Rare Disorder after Son’s Death
April 21, 2006, Lancaster News Article in the Lancaster News regarding KLS and Ryan White, who died of a heart disorder. See article here.
The sleeping years
March 4, 2006, Orange County Register A rare disorder keeps a Placentia teen in bed 20 hours a day, weeks at a time. See article here.
Kleine Levin Syndrome featured on CNN
December 29, 2005, CNN Kleine Levin Syndrome (KLS) was featured on the nationally televised CNN show “Paula Zahn Now” and on CNN Headline News on December 29, 2005. The segment featured Eric, a very brave 15 year old, as he struggles with KLS. In addition, the segment featured Dr. Mignot fromStanford University who stated that he is interested in researching possible genetic factors associated with KLS. He further said that more research is needed to determine a definite cause for Kleine-Levin Syndrome. See article here.
Television show on KLS
April 19, 2001, CBS 48 Hours
Television Show on KLS
March 14, 2001, The Montel Williams Show
I Fell Asleep for 5 Months
November 27, 2000, Woman Magazine Woman Magazine, London England
Television show on KLS
November 4, 2000, Northwest Afternoon Live, ABC Affiliate KOMO, Seattle, WA
The Sleeping Princess
October 17, 2000, NBC Dateline
October 2, 2000, Inside Edition
The Debra Duncan Show Live
September 6, 2000, Houston ABC affiliate KTRK Television show dealt with the experiences of Kristie Brown and Stephen Maier with KLS. See video below:
The Woman Who Couldn’t Wake Up
September 1, 2000, Cosmopolitan Magazine Cosmopolitan Magazine, September 2000 issue. To order a copy contact the Back Issue Dept. 1-800-925-0485
The “Rip Van Winkle” Sleep Disorder
May 11, 2000, Extra
February 28, 2000, Good Morning America
The KLS story of Claire O’Neill 17
Irish Examiner This is the story of Claire O’Neill 17, who has pretty typical KLS episodes. Like may KLS sufferers the road to diagnosis was a difficult one. It describes the trails and tribulations of living with KLS very well. However, the reporter did get a few facts incorrectly. KLS does not affect mostly males. That was thought to be the case a while back but it is no longer the case. See article here.
KLS ON ANDERSON COOPER
Fox News 3/26/12
KLS discussion on the Dr. OZ show April 19
The Dr. Oz show will focus on sleep disorders on April 19th. There will be a segment on KLS. The show airs on different channels and times in different cities. Please check your local listings or log onto the Dr. Oz website to see when it will air in your city.
CNBC Medical Mysteries
CNBC – The Big Idea with Donny Deutsch CNBC aired a program on ‘Medical Mysteries’Wednesday, August 9 @ 10pm on The Big Idea with Donny Deutsch. He interviewed Dani and Varda Farber on KLS.
Sleeping Their Lives Away
ADVANCEforSleep.com 2001 article from Advance for Sleep.com, regardng Steve Maier and his experience with KLS. Since the age of 13, Steve Maier occasionally has had fortnight-long episodes where typical daily living all but stops. He sleeps more than double the average person, and a trance-like state greets visitors while he’s ‘awake.’ ‘You lose some of your motor functions, your ability to reason, your inhibitions,’ said Maier, 27, of San Jose, Calif. ‘A lot of things you see don’t seem real.’ See article here.
Eric Haller’s experience with KLS.
Fox Affiliate TV Show, 2006