What Is Kleine-Levin Syndrome?
Kleine-Levin syndrome (also known as KLS) is a rare genetic disorder characterized by severe muscle weakness. The disease causes muscles to atrophy rapidly, resulting in extreme fatigue and pain. A person with the condition may have difficulty walking or even sitting up without assistance. People with the disease are usually between ages 15 and 30 years old, but it can occur at any age. The disease affects males and females equally. There is no cure for the disease, which generally results in death within one year after onset.
The most common symptom of the disease is muscle weakness. Other symptoms include:
Dizziness or lightheadedness when standing up from a lying position
Weakness in your arms and legs, especially your hands and feet (known as myopathic contracture)
Numbness, tingling, burning sensations, or pain in various parts of the body (known as neuropathy)
You can read more about the symptoms here.
What Is the Cause of the Disease?
Research has shown that KLS is caused by a problem with a specific area of the brain—the hypothalamus. The hypothalamus is responsible for sleep, body temperature, and other important functions related to survival. Mutations in the genes on the fourth chromosome lead to the overproduction of certain neurotransmitters in this part of the brain, which causes KLS.
What Is the Treatment?
There is no cure for KLS. However, finding out what is causing the disease is the first step to treatment. There are a few general treatments that may help some people with this disease. Muscle weakness may be treated with physical therapy or even surgery in extreme cases. People with KLS may also benefit from treatments for other symptoms such as low blood pressure or reduced heart rate.
The most important part of treatment is taking steps to manage mental and emotional stress. Evidence suggests that certain stress hormones increase the symptoms of KLS, so managing stress is extremely important for people with this disease.
If possible, people should avoid jobs or lifestyles that lead to a great deal of stress, at least while they are sick. Additionally, research has shown that some psychiatric drugs may help people with KLS by reducing the production of certain stress hormones.
You can read more about the treatment here.
The community is Concerned About…
Below you can find information on some of the data collected by the community about their concerns when dealing with this disease. This concerns the most important facts that a doctor would need to know before determining how to help a patient, as well as information that may lead to further research on this disease.
Research on KLS is Not Extensive
Research on KLS is fairly new, and many doctors may not be informed on the latest studies. However, there are some online communities where patients can share their experiences with the disease and find others who are dealing with the same issues.
Because the disease is rare, most major medical organizations do not have specific recommendations when it comes to treatment. They may suggest general treatments for similar diseases and disorders, but this may not help patients manage the unique issues they face with KLS.
You can read more about the community’s thoughts on the research here.
Physical Ailments are Common
Many people with Kleine-Levin Syndrome experience a number of physical ailments. Sleep is important for everyone, but people with this disease may need even more sleep than the average person to feel fully rested.
Additionally, people with this disease often suffer from pain in their joints, especially in their knees. This pain can make walking uncomfortable or even impossible at times.
You can read more about the physical ailments here.
People with KLS Also Suffer from Mental Health Issues
Although KLS primarily affects the sleep center of the brain, it can also affect other parts. This can result in depression or anxiety, which are both common among people with KLS.
Becoming so sick that you cannot get out of bed can lead to feelings of isolation and loneliness, making depression more likely. Additionally, the mental exhaustion that comes with having too much on your mind can lead to these issues as well.
You can read more about the mental ailments here.
Unfortunately, Studies are Unable to Pinpoint the Cause of KLS
The research that has been done on the disease is unable to pinpoint a specific cause. Some evidence suggests that it is genetic, while other studies have pointed to a viral or immunological cause.
Many doctors believe that it is a combination of these factors. Research on the disease is ongoing.
You can read more about the causes here.
The Community is Working Together to Find a Cure
Although there hasn’t been much research on this disease, there are several online communities where people gather to share information and offer their support to one another. These communities have been crucial in gathering information about this disease and helping people find treatment options and doctors that may be able to help.
Additionally, these communities have been working together to try to raise money for research organizations so that a cure can eventually be found.
You can learn more about these efforts here.
There is Hope for a Cure
Although KLS is a rare disease that many people have never heard of, there is hope for a cure. By coming together to spread information and support each other, people with the disease feel less alone and more hopeful for the future.
With the advancements in medical science, a cure may be found in the not too distant future.
You can learn more about the community’s goals for the future here.
Sources & references used in this article:
Pharmacological treatment for Kleine‐Levin syndrome by MM Oliveira, C Conti, H Saconato… – Cochrane Database of …, 2009 – cochranelibrary.com
The Kleine-Levin syndrome. Report of a case and review of the literature by SS Papacostas, V Hadjivasilis – European psychiatry, 2000 – Elsevier
Kleine-Levin syndrome following acute viral encephalitis by AE Merriam – Biological psychiatry, 1986 – biologicalpsychiatryjournal.com
Gabapentin for Kleine-Levin syndrome by K Itokawa, M Fukui, M Ninomiya, T Yamamoto… – Internal …, 2009 – jstage.jst.go.jp
The Kleine-Levin Syndrome by M Poppe, D Friebel, U Reuner, H Todt, R Koch… – …, 2003 – thieme-connect.com
The Treatment of Kleine-Levin Syndrome with Lithium* by MA Goldberg – The Canadian Journal of Psychiatry, 1983 – journals.sagepub.com