UCL Queen Square Institute of Neurology


Kleine-Levin Syndrome

Medline NLM definition: A rare form of periodic hypersomnia associated with hyperphagia occurring in males 10 to 25 years old, characterized by periods of ravenous appetite alternating with prolonged sleep (as long as 18 hours), along with behavioral disturbances, impaired thought processes, and hallucinations. Acute illness or fatigue may precede an episode which may occur as often as several times a year. (Stedman, 25th ed)

Kleine Levin syndrome:  factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Keline-Levin Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Kleine-Levin syndrome

Support Groups

KLS Support UK
Independent UK based group aiming to provide support to UK families affected by Kleine-Levin Syndrome, raise awareness and support medical research.

Kleine-Levin Syndrome Foundation (US site)
American website created to provide information and support for those people who have KLS or who care for a person with KLS. 

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.