What is Kleine-Levin Syndrome (KLS)
You might know this rare hypersomnia condition in its more poignant reference, “Sleeping Beauty” Syndrome.
This sleep disorder is characterized by abnormally extended periods of sleep with disruptions to cognition and shifts in mood.
Episodes occur randomly and it’s unclear what triggers them. A person with KLS could go for months or years without an episode, then suddenly face a long period of disabling hypersomnia for no clear reason.
Scientists think there may be a disruption in the parts of the brain responsible for maintaining patterns of sleep and arousal.
KLS strikes most people during adolescence, though it can also occur in children and adults. It tends to affect females more often than it affects males. In most cases, it resolves after ten years, though in some cases, it can recur much later.
KLS usually takes place in individuals who are otherwise physically and mentally healthy. Some theories link KLS with seizure activity, but generally, KLS patients do not have seizures while awake or during sleep.
There about between 1,000 and 3,000 estimated cases of this rare sleep disorder worldwide, and there is no known cure.
What happens when you have KLS?
When awake, people with KLS have extremely high drives for food and uninhibited sexual activity. They may exhibit changes in how they perceive reality, coming across as “charmed” or childlike in their perspectives.
When asleep, episodes of KLS can last days, weeks, even months long. During this time, they may only rise to eat or use the bathroom. It’s fair to say that people with KLS struggle to practice daily self-care while having an episode and are mostly unavailable to attend classes or go to work when the disorder strikes. Even when they are awake, people with KLS may remain bedridden or fatigued.
People who need support for a KLS diagnosis may turn to the KLS Foundation for resources, research, and more guidance for dealing with this rare but disabling disease.
There is no known cure for this unusual sleep disorder. People with KLS must live with caregivers who can help watch over their health and hygiene needs while they are dealing with and episode.
However, just this week, it was reported in the Daily Mail that a seven-year-old boy with KLS was given anti-seizure medication experimentally, and the drug successfully woke him up.