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NINDS Rasmussen's Encephalitis Information Page

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What is Rasmussen's Encephalitis?

Rasmussen’s encephalitis is a rare, chronic inflammatory disease that usually affects only one hemisphere of the brain.  It occurs in children under the age of 10 (and more rarely in adolescents and adults), and is characterized by frequent and severe seizures, loss of motor skills and speech, paralysis on one side of the body (hemiparesis), inflammation of the brain (encephalitis), and mental deterioration.  Most individuals with Rasmussen’s encephalitis will experience frequent seizures and brain damage over the course of the first 8 to 12 months, and then enter a phase of permanent, but stable, neurological deficits.  Scientists currently think that Rasmussen’s encephalitis is an autoimmune disease in which immune system cells enter the brain and cause inflammation and damage. 

Is there any treatment?

Anti-epileptic drugs are usually not effective in controlling seizures.  Recent studies have shown some success with treatments that suppress or modulate the immune system, in particular those that use corticosteroids, intravenous immunoglobulin, or tacrolimus.  Surgery to control seizures may be performed in later stages of the disease when neurological deficits stabilize.  Surgical procedures, such as functional hemispherectomy and hemispherotomy, may reduce the frequency of seizures and also improve behavior and cognitive abilities.   

What is the prognosis?

The prognosis for individuals with Rasmussen’s encephalitis varies.  Despite the advances in medical treatment, none has yet been shown to halt the progress of the disease in the long term.  The disorder may lead to severe neurological deficits or it may cause only milder impairments.  For some children, surgery decreases seizures.  However, most individuals with Rasmussen’s encephalitis are left with some paralysis, cognitive deficits, and problems with speech.  

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to Rasmussen’s encephalitis in its laboratories at the National Institutes of Health (NIH), and also supports additional research through grants to major medical institutions across the country.  Much of this research focuses on finding better ways to prevent, treat, and ultimately cure progressive neurological disorders, such as Rasmussen’s encephalitis.

NIH Patient Recruitment for Rasmussen's Encephalitis Clinical Trials

Organizations

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe, MI   48201-2227
aarda@aarda.org
http://www.aarda.org
Tel: 586-776-3900 800-598-4668
Fax: 586-776-3903

 Epilepsy Foundation
8301 Professional Place
Landover, MD   20785-7223
postmaster@efa.org
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

  


Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated February 07, 2008