So what is Kleine Levin Syndrome? According to the KLS Foundation, “Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understand of the world. The disorder strikes adolescents primarily but can occur in younger children and adults. At the onset of an episode the patient becomes progressively drowsy and sleep for most of the day and night (hypersomnolence), sometimes waking up only to eat or go to the bathroom. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. In between episodes, those with KLS appear to be in perfect health and with no evidence of behavioral or physical dysfunction. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome.”
While the main symptom of KLS is excessive sleeping (hypersomnia), the whole demeanor of the patient is altered, leading to a child-like behavior. When awake, the patient is not himself or herself. It is as if the child is possessed. The patient experiences feelings of confusion, disorientation, lethargy, and apathy. These episodes are cyclical. No doctor, parent, friend, or patient has any knowledge of how long the episode will last nor does anyone know when another one will begin. Not all people diagnosed with KLS experience every symptom nor do all episodes last the same amount of time or occur as frequently, which is very stressful and uneasy for everyone who is impacted by the occurrence of a KLS episode.
While there is a general understanding of the symptoms and descriptions of KLS, there is an overwhelming and substantial amount of mystery, confusion, and unknown. All that is known about KLS is superficial and generally, unhelpful. One the bright side, KLS is not life threatening and typically goes away after a decade as mysteriously as it began. However, as a result of the little research on KLS, there is no conviction as to the origins of the disorder, how it attacks the body, what triggers it, how to treat it in an episode, or how to cure it forever. Stanford University within the past few years just started conducting research on the syndrome. While this is a great first step, the problem is that because KLS is so rare, the research is limited because there are only so many patients available for testing, and not all patients are willing to be “lab rats”. Fortunately, Stanford and other renowned doctors are confident that KLS is an autoimmune disease, and as such, the potential for a treatment and/or cure is possible. There have been many case studies trying to find a common link between all patients as well as case studies trying different medications to see the results on patients. While there are no definite medications, many have been proven to help patients shorten their episodes and the frequency of them as well. Hopefully soon, whether it is a parent, doctor, or graduate researcher, a treatment, cure, or the origin of KLS will be discovered.
While the main symptom of KLS is excessive sleeping (hypersomnia), the whole demeanor of the patient is altered, leading to a child-like behavior. When awake, the patient is not himself or herself. It is as if the child is possessed. The patient experiences feelings of confusion, disorientation, lethargy, and apathy. These episodes are cyclical. No doctor, parent, friend, or patient has any knowledge of how long the episode will last nor does anyone know when another one will begin. Not all people diagnosed with KLS experience every symptom nor do all episodes last the same amount of time or occur as frequently, which is very stressful and uneasy for everyone who is impacted by the occurrence of a KLS episode.
While there is a general understanding of the symptoms and descriptions of KLS, there is an overwhelming and substantial amount of mystery, confusion, and unknown. All that is known about KLS is superficial and generally, unhelpful. One the bright side, KLS is not life threatening and typically goes away after a decade as mysteriously as it began. However, as a result of the little research on KLS, there is no conviction as to the origins of the disorder, how it attacks the body, what triggers it, how to treat it in an episode, or how to cure it forever. Stanford University within the past few years just started conducting research on the syndrome. While this is a great first step, the problem is that because KLS is so rare, the research is limited because there are only so many patients available for testing, and not all patients are willing to be “lab rats”. Fortunately, Stanford and other renowned doctors are confident that KLS is an autoimmune disease, and as such, the potential for a treatment and/or cure is possible. There have been many case studies trying to find a common link between all patients as well as case studies trying different medications to see the results on patients. While there are no definite medications, many have been proven to help patients shorten their episodes and the frequency of them as well. Hopefully soon, whether it is a parent, doctor, or graduate researcher, a treatment, cure, or the origin of KLS will be discovered.