Most published articles on KLS in the medical and scientific literature are reports of one or two KLS cases by an attending physician. While helpful in confirming and sometimes reporting new observations, these ‘case reports’ usually do not significantly contribute to a better understanding of KLS.
In the last few years, there have been a few more informative studies and review articles based on observations and conclusions from a larger cohort of KLS cases.read more
As a result there is very little incentive for researchers and pharmaceutical companies to invest in KLS research.
Please consider donating today! Contributions from individuals are critical to the ongoing success of the KLS Foundation’s efforts to educate, support families and find a cure for KLS.
Thank you for your support!read more
You may want to use this list as a starting point for your search for a doctor. Finding a doctor or other health professional that is right for you is a personal process that can take time.
It is important to find someone you feel you can speak with openly and honestly. Even if your doctor does not know much about Kleine-Levin Syndrome (KLS), he or she should take the time to learn about it. As you search for a health care professional, keep in mind that you have certain rights no matter who you are, what challenges you are facing, or how much money you have. You have a right to:read more
Alanna Wong wrote an article about tips for Living With KLS. You can read the 12 Tips she writes about here: 12 KLS Tips by Alannaread more
“Sleeping Away Their Youth” Cleveland Jewish News featuring Arielle & Dani Farber - October 13, 2006 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. Life and Strength Following KLS featuring Arielle & Dani Farber – October 2010 “More than 4 years after their last episodes of KLS, the Farber siblings tackle the last of the physical and emotional hurdles in their journey...read more
Irish Examiner featuring Claire O’Neill “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...read more
Weekly Reader/Altered State featuring Eric Haller - 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.read more
“Rip Van Winkle Disease” August 15, 2007, DISCOVER MAGAZINE Science, Technology and the Future featuring Steve Maier “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...read more
Deborah Duncan Show Live featuring Kristie Brown & Steve Maier; September 6, 2000 “When Kristie is asleep for weeks or months at a time, her mother essentially assumes her life.” See video below featuring Kristie Brown & Steve...read more
CNN Mysteries of the Mind featuring Eric Haller “Tonight after a long day of running around and getting things done, we are all looking forward to a good night’s sleep. In fact, most of us just can’t get enough of it…” See video below featuring Eric Haller and Dr. Palton See video transcript on Eric Haller; December 29, 2005, CNN-See below: 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...read more
Kleine-Levin Syndrome Foundation Fundraiser Benefiting: Nick Smith and all adolescents living with KLS All Proceeds go to Awareness and Research for the Kleine Levin Syndrome Foundation When: Saturday, July 19, 2014 Where: Indian Lake Country Club 10502 E 75th Street, Indianapolis, IN 46236 GOLF SHOTGUN Begins: at 1:30pm – arrive at 12:30 pm Cost $35.00 per person– includes Golf/Cart/Box Lunch/Drinks $45.00 includes above PLUS dinner/drinks Prizes awarded [longest drive, closest to pin, longest put] immediately after golf...read more
Kleine Levin Syndrome 10K Run “For many young people with Kleine Levin Syndrome it feels like time travelling – their last clear memory is being at a certain place doing whatever normal people do and suddenly they wake up somewhere else, they have no idea time has travelled forward and they have missed days, weeks, months or even a year! The rest of the world moves on without them. You live with the frightful reality that an episode may occur with devastating effects on the adolescent education, the start of their careers, their...read more
“I have KLS and I just became a Mom” If you think that becoming a parent is out of the question if you have KLS, Nathalie Hoyland will prove you wrong. The 30-year-old careers advisor from the UK was diagnosed with the disorder at 25, but she just gave birth to a daughter and is enjoying every minute of being a mom. My KLS symptoms began when I was 17, but I wasn’t officially diagnosed until just after my 25th birthday. Growing up with KLS was very frustrating. It basically caused me to put my life on hold every few months, and as a...read more