Kleine Levin Syndrome: The Sleeping Beauty Disorder

Kleine Levin Syndrome…also known as “Sleeping Beauty” Syndrome

Kleine Levin Syndrome, the Sleeping Beauty DisorderMost people have never heard of Kleine Levin Syndrome, also known as KLS. However most know the story of Sleeping Beauty, a young woman placed under a sleeping spell by an evil queen. When a prince finally awakens her with a kiss, the two live happily ever after – in the popular Disney version.

The story dates back to at least the 1600s and is believed to be based on a folk tale called Perceforest. Many believe that the inspiration for Sleeping Beauty proves that a condition called Kleine Levin Syndrome has existed for generations. The condition, however, wasn’t formally identified until the early part of the 20th Century.

In 1925, a neurologist in Frankfurt, Germany named Will Kleine described a handful of cases where patients experienced excessive sleepiness along with a number of other vexing symptoms. Four years later, a New York psychiatrist by the name of Max Levin described a similar case and in 1935, Levin published a paper about the condition.

This brought much needed attention to the issue and by 1942, a British neurologist named MacDonald Critchley, had not only published more information and his own case studies of the condition, he officially named the illness after the first two pioneering doctors.

This official recognition of the condition was the beginning of formal research into the condition, but that doesn’t mean it’s well understood. Today Kleine Levin Syndrome is classified as one of the world’s rarest diseases by organizations such as Global Genes and the National Organization for Rare Disorders (NORD).

What is Kleine Levin Syndrome?

Kleine Levin Syndrome is a hypersomnia, a sleep disorder in which the afflicted experience periods of excessive sleeping. The victims of this disorder often also experience excessive appetite (hyperphagia), increased sexual urges (hypersexuality) and dramatic mood swings.

Symptoms of Kleine Levin Syndrome

Symptoms of Kleine Levin Syndrome can be easily misdiagnosed. Many experts believe this contributes not only to a misunderstanding of the disorder but also to the public perception that it doesn’t even exist.

Episodes of KLS are marked with the need for excessive sleep as the most identifiable symptom. Patients experience the need to sleep for 18-21 hours a day while exhibiting bizarre cognitive and behavioral symptoms during their waking hours.

During waking hours, patients can exhibit a number of notable symptoms, including:

  • Increased appetite resulting in binge eating and weight gain
  • Marked increase in sexuality (exhibited primarily in men)
  • Extreme lethargy
  • Decreased emotional responses
  • Slurred speech
  • Disorientation
  • Aggression
  • Memory impairment
  • Anxiety
  • Hallucinations
  • Cognitive problems – can’t focus, absentminded, short or no attention span

Since the symptoms of Kleine Levin Syndrome are so varied, the condition is often misdiagnosed as extreme depression or even schizophrenia. This was the case for Alanna Wong who, in 2012, shared her own story in order to shed light on this rare but serious condition.

Wong began exhibiting symptoms of KLS when she was only 10 years old. She experienced episodes several times a year and, at first, her parents worried about a brain injury. The otherwise bright, polite and outgoing young girl would unexpectedly sleep all day and revert to toddler-like behavior, binge eating and bouts of aggression while awake. For nearly a decade doctors misdiagnosed her. It wasn’t until she was nearly 20 that her condition was properly identified.

Causes of Kleine Levin Syndrome

Since it affects only a handful of people worldwide, clinicians still don’t fully understand the causes of Kleine Levin Syndrome. However, the body of KLS research is beginning to grow. Episodes can come seemingly out of nowhere, though researchers have determined some common factors and potential causes.

The disorder appears to mainly affect young men and manifests in their mid to late teens. While men are affected more often than women at a rate of 3 to 1, many young women and older men are still diagnosed. The condition is also more prevalent within the Jewish population and has been seen to run in families. This leads many experts to believe there is an underlying genetic component.

KLS is seen most often in younger people with the majority of patients reporting the onset of symptoms during their teenage years. Some prescriptions, including lithium, anti-psychotics and benzodiazepines have been reported to help with symptoms. However, adverse side effects make them often a last resort for patients with extreme cases.

The condition typically tapers off and symptoms are gone completely by the time a person reaches 30.  This isn’t much comfort, however, to those who find themselves losing days, weeks and months of their lives to the disorder.

There are no known cause that triggers the condition, but a majority of patients do experience some sort of infection prior to their first episode. Other systems believed to play a part in triggering an episode include the thyroid, metabolism and the hypothalamus (the region of the brain that controlling appetite, body temperature and sleep).

Treatment for Kleine Levin Syndrome

Currently, there is no proven pharmaceutical treatment for Kleine Levin Syndrome. While some medications have been used to mitigate specific symptoms such as hallucinations and mood swings, these are only prescribed in extreme cases.

Instead, treatment is focused on managing the condition and addressing issues such as digestive, skin and muscle care when the patient undergoes extended periods of unconsciousness. Other therapies help patients to deal with the stress the condition can cause as it interrupts their life.

Today, people living with Kleine Levin Syndrome approach the disorder with a sense of hope. Researchers are working to learn more about the condition and develop ways to manage its troublesome symptoms. While research continues, those living with KLS have begun to step forward in order to shed light and share information about this rare but serious condition. Those affected are becoming advocates, not only for themselves, but for those who remain undiagnosed.