It can be difficult to grasp the scope of a rare disease, its symptoms, and impact—especially if certain individuals don’t fall within the understood or narrowly defined parameters of symptoms. In the past, this has been the case for Kleine-Levin syndrome (KLS), a rare disorder characterized by the need for excessive amounts of sleep. When people had symptoms outside of the known confines, diagnoses were not given. The Kleine-Levin Syndrome Foundation has worked to improve the global understanding of KLS. Their research, shares the organization in a news release, recently culminated in the inclusion of expanded and updated diagnostic criteria in the International Classification of Sleep Disorders 3rd Edition (ICD-3).
In particular, the diagnostic criteria now accounts for those cases that are “beyond the norm.” Additional updates include language to shorten the diagnostic process, defining symptoms and characteristics to help physicians and clinicians identify potential KLS cases, and the core symptoms that appear during episodes. KLS isn’t necessarily constant; it causes recurrent episodes of excessive sleepiness, which often come with behavioral and cognitive issues. Prior to these new guidelines, the existing literature failed to account for these periods of normalcy.
In addition to medical research, the diagnostic criteria were adjusted using insight from experts within the medical and sleep disorder fields.
About Kleine-Levin Syndrome (KLS)
Kleine-Levin syndrome is a rare sleep disorder which causes long, recurrent sleep episodes that can last anywhere from a few days to a few months. During episodes, people may sleep for up to 20 hours each day. When they are awake, they often experience severe brain fog and even hallucinations. Doctors aren’t sure what causes KLS, but many people believe that this disorder can result from hypothalamic damage or dysfunction, an infection, or head injury. KLS comes with a typical diagnostic delay of around 4 years. It often affects adolescent males.
Symptoms and characteristics of Kleine-Levin syndrome, which are often preceded by respiratory infections, can include:
- Irritability
- Lethargy
- Apathy
- Slurred speech
- Disorientation
- An abnormal sex drive
- Excessive eating or other abnormal behaviors
Treatment usually involves medications and stimulants to help manage symptoms. Right now, there are no cures.
