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Understanding and Dealing with Kleine-Levin Syndrome


Kleine-Levin Syndrome (KLS) is an extremely rare disorder that causes people to experience excessive sleepiness. They can sleep up to around 20 hours a day. Due to this, the condition was also named after a fictional character in a children’s fairytale.

In some cases, people with the disorder can sleep for a couple of months. One Colombian woman who has the condition slept for around two months. While studies were conducted on the disorder, researchers have yet to find the leading cause behind it.

Symptoms of the Disorder

People with KLS do not experience the symptoms every day. They even appear in perfect health without any signs they are living with the disorder in between episodes. But when they come out, they can sleep for days, weeks, or even months.

Extreme sleepiness is the most common symptom of the disorder. When a person feels this, he may have a strong desire to hit the sack and doesn’t want to get up from bed in the morning. Even though they sleep, they still get up to go to the bathroom and eat. After this, they go back to sleep.

Aside from extreme sleepiness. People with the disorder also experience severe fatigue, particularly among those who are bedridden.

According to the Kleine-Levin Syndrome Foundation, the other symptoms of the disorder include excessive food intake, irritability, odd behavior, aggression, confusion, hallucination, a feeling of unreality, and an extreme sex drive.

And as indicated earlier, these symptoms do not appear in between episodes. But these episodes are not predictable. And can happen without any warning. It can happen a week, month, or even years after an episode.

When people with KLS have an episode, they do not remember a lot while experiencing the attack.

Causes of the Disorder

While researchers have yet to find out what causes KLS, some doctors think some factors increase the risk of a person getting the condition. For instance, an injury to the hypothalamus can cause the disorder to emerge.

The hypothalamus is the area in the brain that helps control essential bodily functions, including body temperature, appetite, and sleep. Injury to this part of the brain may cause KLS, but no study confirms this possibility.

A group of cells in the hypothalamus sends chemical signals to the cerebral cortex to keep us awake. Similarly, another group of cells in the same areas of the brain sends similar signals to help us go to sleep. The hypothalamus essentially tells our brain to stay awake or go to sleep.

And when this is damaged, KLS may develop. Some people also develop the disorder after they get the flu. Due to this, researchers believe the condition is an autoimmune disorder. On the other hand, cases are pointing to a genetic connection to KLS. Some cases even show that KLS can affect more than one member of the family. A study in 2005 showed that around 72 percent of people with KLS saw the disorder coming out after they had an infectious disease. This led to speculations that a deadly pathogen that can affect the hypothalamus can cause the condition to emerge.

Since it is a rare disorder, it may be necessary to recruit patients with this rare disease to conduct an in-depth study on its causes.

People at Risk

Since studies about the disorder are as limited as the disorder itself, it’s challenging to point out the people at risk. But a study showed that around 70 percent of people with KLS are adolescent males. But it doesn’t mean that the disorder doesn’t affect adolescent females and other age groups of both genders.

tired sleeping studying

Diagnosing the Disorder

It is challenging to diagnose KLS since doctors may misdiagnose it as a psychiatric disorder due to some f its psychiatric symptoms. Due to this, an accurate diagnosis of the disorder can take years. Since it’s difficult to diagnose, doctors use the process of exclusion. No single test can confirm the condition, so the doctor will conduct different tests to rule out other diseases.

KLS mimics other health conditions so that the doctor will conduct diagnostic and physical tests. The tests will include blood work, MRI, and CT scan. A mental health evaluation is also conducted since one of the characteristics of depression is excessive sleepiness.

Managing the Disorder

There is no cure for the disorder yet, so it’s best to manage it if a person has it. Managing it means using medications to deal with the disorder’s different symptoms, including stimulants to reduce sleepiness and medicine for a mood disorder.

Living with KLS isn’t easy, so it requires support from the family to allow a person with the disorder to live a relatively normal life.

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