What is KLS?

Kleine Levin Syndrome (KLS) is a disorder marked by an episodic primary hypersomnia, derealization and changes to mood and cognition. Other symptoms can include emotional regression, hallucination, hypersexuality, brachycardia, loss of memory for the period of the episode. Episodes can last days, weeks or months.

In plainer language, these patients sleep a lot. My son has slept as long as 19 hours. Through the KLS Foundation, I’ve met parents of children who have slept for 30 hours at a time.

The mean age of onset is 16 and it affects roughly two males for every female sufferer. Although the typical patient is a teenage or young adult male, the disease can strike almost any age from preschool to geriatric.

The press likes to call it “Sleeping Beauty Syndrome.” That’s a hideous name for this illness. It evokes an image of a beautiful girl waiting only for a kiss to wake up and live happily every after. Bull!

If we must look for a literary connection, how about Rip Van Winkle Syndrome? That’s a story about a man who slept for many years, returned to his home disoriented and lost in his own town. He was isolated and unable to connect with his neighbors because he was so wildly out of his own time. This is the reality many face with KLS. Days, weeks or months pass and they feel as if only a day has passed.

The only medical treatment which performs better than placebo for KLS patients is lithium. However, it only works for 30% to 40% of patients. For the remaining patients, up to 70%, they have to wonder if they will wake up the next morning when they go to bed, or take a nap. There is literature to indicate some success with other medical interventions but they are largely anecdotal and have not been reliably reproduced.

This disease has no reliable treatment, or cure and very little money goes to research. If you ask an expert what causes KLS, they can give you their current working hypothesis. There appears to be a genetic component to the disease (not necessarily inherited). It appears to possibly be auto-immune. It appears to resolve itself within a decade or two on average, but some patients have gone decades more.

For the most part, this disease steels a person’s childhood and young adult years. It totally sucks but that’s a father’s perspective on what KLS is. See our links for a more scientific explanations.