CONTACT :
Patricia Jones, Executive Director
Adult-onset Rasmussen's Encephalitis (abbreviated to RE here) is an extremely rare, progressive, central nervous system disorder, characterized by seizures, hemiparesis (paralysis on one side), inflammation of the brain, and mental deterioration. RE is also known as Rasmussen's Syndrome and Rasmussen's Disease. This disorder occurs almost exclusively in children under the age of 10. Since this disease was first given its name in 1958, the number of cases recorded in medical literature is very small. It is reasonable to assume, however, that there are cases which have not yet been identified as RE. The cause of RE is unknown, although some cases are thought to follow viral infections, such as influenza and measles, and perhaps head injury.
Until very recently, the ultimately customary treatment has been hemispherectomy (excising the affected area of the brain). Since the victims are mostly young children, the remaining areas of the brain can often learn to perform some tasks that the removed section performed, and often the young patients resume a normal lifestyle with little or no restrictions or handicaps. An adult brain usually cannot learn new tasks in this manner. Where this procedure was contra-indicated, and sometimes even when performed, the prognosis for Rasmussen's patients has been poor.
During the past few years, an autoimmune relationship to RE has been discovered. In some cases, treatments of immune globulin (IVIG) infusion has shown varying degrees of effectiveness in halting progress of this disease; in a few cases, some lost functionality has been restored. In cases where seizures had been debilitating, results of IVIG have ranged from moderate improvement to near-elimination of seizures. It is thought that the immune globulin counters the autoimmune attack by apparently confusing the patient's own antibodies enough that they suspend their activity. This treatment may have to be continued on a semi-regular basis (monthly, bi-monthly, or whatever patient seems to need) for a considerable period of time, and possibly for the rest of the patient's life. As this method of treatment is new, long-term effectiveness has not yet been determined.
Several alternative treatment courses include plasmapheresis (removal, reconstitution and re-infusion of patient's plasma), ketogenic diet (high fat, low/no carbohydrates), and steroids. The latter is used especially cautiously. Steroid treatment has produced results similar to IVIG, and like IVIG, long-term effectiveness is not known. However, the negative effects of long-term steroid use is well-documented.
Our primary objective is to provide support to Rasmussen's families by sharing information, caring and understanding. We are also very interested in locating some of the adult patients.We then plan to build this network to synergize, thus we want to build a network which will enable us to synergize, thus creating one collective voice, speaking out on behalf of Rasmussen's patients. Attention needs to be focused on this orphan disease. We hope to direct more efforts at funding research to find a successful treatment and cure, and possibly even prevention.
If you would like to help support the Adult-Onset Rasmussen's Encephalitis Support Network please E-mail:
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