If your doctor says you have refractory epilepsy, it means that medicine isn't bringing your seizures under control. You might hear the condition called by some other names, such as uncontrolled, intractable, or drug-resistant epilepsy.
You can have refractory epilepsy as an adult, or your child might have it. About 1 in 3 people with epilepsy will go on to develop refractory epilepsy.
Epilepsy is the medical name for having seizures again and again, when there doesn't seem to be a clear cause...
The Child Neurology Foundation is a patient advocate organization. The foundation provides funding for research and educational programs for patients and families.
Epilepsy Foundation -- Epilepsy.com 8301 Professional Place East
Landover, MD 20785-2353
Phone: (800) 332-1000 www.epilepsy.com
Epilepsy.com offers in-depth information for patients with epilepsy and their families. In addition to data on diagnosis and treatment, the website has tips on living with epilepsy, news, a resource library and information on epilepsy research.
National Institute of Neurological Disorders and Stroke
National Institutes of Health
PO Box 5801
Bethesda, MD 20824
(800) 352-9424 www.ninds.nih.gov/
The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the National Institutes of Health. NINDS conducts and supports research into neurological disorders (such as epilepsy). The NINDS website offers information on funding, clinical trials and the latest news on research and treatment of neurological illnesses.
The Charlie Foundation for Ketogenic Therapies
515 Ocean Ave,, #602N
Santa Monica, CA 90402
Phone: (310) 393-2347 www.charliefoundation.org
The Charlie Foundation provides information on the ketogenic diet treatment for epilepsy, including educational programs and training seminars for health care professionals, research support, and patient education materials (including books and videos).