What is Rasmussen's encephalitis?
Rasmussen's encephalitis (RE) is a very rare, chronic inflammatory neurological disease that usually affects only one hemisphere (half) of the brain. It most often occurs in children under the age of 10 but can also affect adolescents and adults.
RE has features of an autoimmune disease in which immune system cells enter the brain and cause damage. The disease is characterized by:
- Frequent and severe seizures
- Inflammation of the brain (encephalitis)
- Mental deterioration
- Progressive loss of neurological functions including motor skills, speech, and eventual paralysis on one side of the body (hemiparesis)
Children with RE frequently enter a phase of permanent, but stable, neurological deficits after eight to 12 months; the disease in adults and adolescents may continue to progress slowly.
Anti-epileptic drugs may be prescribed but may not entirely control 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 recommended, particularly in children where recovery potential is high.
The outlook for individuals with RE varies. For some children, surgery may halt disease progression and stabilize seizures. However, most individuals with RE are left with some paralysis, cognitive deficits, and problems with speech. In some very rare cases, the disease can progress to involve the opposite brain hemisphere.
How can I or my loved one help improve care for people with Rasmussen's encephalitis?
RE is considered a rare disease, which often means there is not much information known about it. This is usually the case because doctors and researchers do not see many people with RE, which makes it hard to learn from them through observations or large studies.
Consider participating in a clinical trial so clinicians and scientists can learn more about RE and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
Where can I find more information about Rasmussen's encephalitis?
Information may be available from the following resources:
Phone: 301-459-3700 or 800-332-1000; 866-748-8008 Spanish