When a person has two or more unprovoked seizures, they have epilepsy. An estimated 2.2 million Americans have epilepsy, with up to 200,000 new cases diagnosed in the United States each year. Approximately 1 in 26 people will develop epilepsy at some point in their lives, and the onset of epilepsy is highest in children and older adults. Epilepsy impacts 65 million people worldwide and is a spectrum that spans more than 40 syndromes. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience uncontrolled seizures. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. According to advocate group Citizens United for Research in Epilepsy, epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.
Sudden Unexpected Death in Epilepsy, or SUDEP, is one of the many risks that accompanies a life with epilepsy. According to the National Institutes of Health, SUDEP is the most common epilepsy-related cause of death. The DDF’s approach to making progress against SUDEP is multi-pronged:
- Challenge and encourage doctors, nurses and all medical professionals to address SUDEP with epilepsy patients.
- Seek out technologies and devices that serve as seizure detection and prediction systems for home use that sound an alarm and alert others when seizure activity occurs.
- Partner with The SUDEP Institute, Partners Against Mortality in Epilepsy (PAME), the North American SUDEP Registry (NASR) and others to advance collaborative campaigns designed to combat SUDEP.
- Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly minimize the SUDEP risk.
- Utilize our Medical Advisory Board to provide the latest news in SUDEP research and SUDEP-related issues.
Click here to read parent testimonials about SUDEP given before the Institute of Medicine panel ahead of its 2012 Report, Epilepsy Across the Spectrum.