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Studies with patientsTable of Contents (click to jump to sections)
What is Rasmussen's Encephalitis?
Is there any treatment?
What is the prognosis?
What research is being done?
Organizations
What is Rasmussen's Encephalitis?
Rasmussen's encephalitis is a rare progressive neurological disorder, characterized by frequent and severe seizures, loss of motor skills and speech, hemiparesis (paralysis on one side of the body), encephalitis (inflammation of the brain), dementia, and mental deterioration. The disorder, which affects a single brain hemisphere, generally occurs in children under the age of 10.Is there any treatment?
When seizures have not spontaneously remitted by the time hemiplegia and aphasia are complete, the standard treatment for Rasmussen's encephalitis is surgery to remove or disconnect the affected part of the brain (hemispherectomy). Although anti-epileptic drugs may be prescribed initially, they are usually not effective in controlling the seizures. Alternative treatments may include plasmapheresis (the removal and reinfusion of blood plasma), ketogenic diet (high fat, low carbohydrate), and steroids.
What is the prognosis?
Prognosis for individuals with Rasmussen's encephalitis varies. Untreated, the disorder may lead to severe neurological deficits including mental retardation and paralysis. In some patients surgery decreases seizures. However, most patients are left with some paralysis and speech deficits.
What research is being done?
The NINDS supports and conducts studies aimed at understanding neurological conditions that can damage the brain such as Rasmussen's encephalitis. The goals of these studies are to find ways to prevent and treat these disorders.
Select this link to view a list of studies currently seeking patients.
OrganizationsAmerican Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI
48201-2227
aarda@aol.com
http://www.aarda.org
Tel: 586-776-3900
800-598-4668
Fax: 586-776-3903
Epilepsy Foundation
4351 Garden City Drive
Suite 500
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
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.
Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
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