What is KLS?
Kleine-Levin Syndrome (KLS) is a rare neurological disorder which affects roughly 1000-2000 known sufferers worldwide. It is a life-altering illness which is widely misunderstood and frequently misdiagnosed as a psychological illness. The illness often strikes in adolescence and sufferers exhibit symptoms for many years before the illness begins to taper off and eventually self-limits. KLS is a devastating illness which steals the patient of time, experiences, and relationships.
KLS is episodic, meaning the patient alternates between sick (symptomatic) and healthy (asymptomatic) states. Episodes vary in duration and can last days, weeks, months, or even years. When in an episode, a KLS sufferer functions in a dream-like or altered state and can exhibit periods of excessive sleep and altered personality traits. In between episodes the patient returns to normal with no outward signs of behavioral dysfunction. When healthy, a patient may not have much memory of the time spent ill.
During a KLS episode, it has been shown that blood flow is reduced to the thalamus region of the brain, in which the hypothalamus regulates the basic human drives of fight, flight, food, and sex. The decreased blood flow is either the cause or effect of KLS. There are physical and behavioral changes which include excessive sleep, altered personality, and a dream-like state. Cognitive function is disrupted during episodes. When supporting a KLS sufferer, it is important to remember that behavioral changes are not a choice but are in fact caused by a change in brain function.
Eponym: Willi Kleine and Max Levin are doctors that in the early 1900s described cases of recurrent hypersomnolence and hyperphagia with altered behavior- hence Kleine-Levin Syndrome. The name “Sleeping Beauty Syndrome” has also been attributed to describe KLS because of the focus on the hypersomnolence symptom.