Kleine Levin syndrome

Title

Other Names:

Kleine-Levin hibernation syndrome; Familial Kleine-Levin syndrome; Familial hibernation syndrome

Categories:

Congenital and Genetic Diseases; Nervous System Diseases

Summary Summary

Kleine Levin syndrome is a rare disorder characterized by recurrent episodes of excessive sleep (hypersomnia) along with cognitive and behavioral changes. Affected individuals may sleep for up to 20 hours per day during an episode. These episodes usually last for a few days to a few weeks. An episode may start abruptly and is sometimes preceded by an upper-respiratory-type infection. During an episode, people with Kleine Levin syndrome can also display abnormal behavior, such as excessive food intake (hyperphagia), irritability, childishness, disorientation, hallucinations, and an abnormally uninhibited sex drive. Affected individuals are symptom-free between episodes. The time between episodes varies. Kleine Levin syndrome primarily affects adolescent males, but it also affects females and individuals of other ages. The underlying cause of this condition is unknown. Episodes tend to decrease with advancing age. There are no consistently effective therapies, although stimulants (modafinil, methylphenidate, amphetamine) and mood stabilizers (lithium) may be prescribed with varying results.^[1]^[2]^[3]^[4]

Last updated: 7/10/2017

Symptoms Symptoms

The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.

Signs and Symptoms	Approximate number of patients (when available)
Autosomal dominant inheritance	-
Confusion	-
Episodic hypersomnia	-
Polyphagia	-
Vivid hallucinations	-

Last updated: 8/1/2017

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Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Kleine Levin Syndrome Foundation
P.O. Box 5382
San Jose, CA 95150-5382
Telephone: 408-265-1099
Fax: 408-269-2131
E-mail: facts@klsfoundation.org
Website: http://www.klsfoundation.org
National Sleep Foundation
1522 K Street NW Suite 500
Washington, DC 20005
Telephone: 202-347-3471
Fax: 202-347-3472
E-mail: nsf@sleepfoundation.org
Website: http://www.sleepfoundation.org

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Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Genetics Resources

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by GeneTests, the American College of Medical Genetics, and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Kleine Levin syndrome. Click on the link to view a sample search on this topic.

News & Events News & Events

News

IRDiRC Goals 2017-2027: New Rare Disease Research Goals for the Next Decade
August 10, 2017

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I'm 53 years old and have a very unusual sickness. Since I was 16 years old, I have been sick for several periods of the year. I was diagnosed with Kleine Levin syndrome four years ago, and the symptoms are very much like what other patients have described. Is there anyone else that has been sick with Kleine Levin syndrome for so long? I also received the diagnosis of myotonic dystrophy type 2 five years ago. Can Kleine Levin syndrome and myotonic dystrophy type 2 have anything to do with each other? See answer

Have a question? Contact a GARD Information Specialist.

References References

NINDS Kleine-Levin Syndrome Information Page. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/All-Disorders/Kleine-Levin-Syndrome-Information-Page. Accessed 6/5/2017.
Arnulf I. Kleine-Levin Syndrome. Sleep Med Clin. Jun 2015; 10(2):151-61. https://www.ncbi.nlm.nih.gov/pubmed/26055863.
Miglis M, Guilleminault C. Kleine-Levin Syndrome. Curr Neurol Neurosci Rep. Jun 2016; 16(6):60. https://www.ncbi.nlm.nih.gov/pubmed/27137943.
Afolabi-Brown O, Mason TB. Kleine-Levin Syndrome. Paediatr Respir Rev. Dec 23, 2016; https://www.ncbi.nlm.nih.gov/pubmed/28216256.