Doose Syndrome Epilepsy Alliance

Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures and the seizures originate from all over the brain as opposed to coming from one focal area. Onset of MAE commonly occurs in the first five years of life.

Fatality is also a concern and rarely mentioned after diagnosis as a probability. In fact, thousands of children die every year from “Sudden Unexplained Death in Epilepsy (SUDEP.)” SUDEP applies to a sudden death in someone known to have epilepsy, in the absence of an obvious cause for the death. Although most instances are presumed to occur during a seizure, not all do and a seizure at the time of death is not a requirement for diagnosis of SUDEP.
Areas of focus are; the need for early detection and diagnosis, improved access to epilepsy specialists and comprehensive care, criteria for quality care of epilepsy and co-morbid conditions, mobility devices and an improved understanding of epilepsy's effects on cognition, mental health, and other aspects of life.

Our goals are to create a better understanding of Doose Syndrome by helping fund research and provide quality care needed by families that are suffering through hundreds of seizures a day. Whether it is direct financial support for medications, hospital bills, medically related transportation, mobility devices, durable medical equipment or protective helmets, our goal is to help ease the distress and pain of living with a destructive disorder. In addition, we plan to enable the collaboration of health care professionals and families across the world by providing a platform through which information, research and resources can be shared.
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