•  2.2 million people in the United States and more than 65 million people worldwide have epilepsy;

•  150,000 new cases of epilepsy are diagnosed in the United States annually;

•  1 in 26 people in the United States will develop epilepsy at some point in their lifetime;

•  children and older adults are the fastest-growing segments of the population with new cases of epilepsy;

•  risk of death increases for people with epilepsy, with an estimated 10 years of life lost for people whose epilepsy has a known cause and 2 years lost for people with epilepsy from an unknown cause;

•  the number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from 1 of every 10,000 newly diagnosed to 9 of every 1,000 candidates for epilepsy surgery; and

•  the annual direct medical care cost of epilepsy in the United States is $9.6 billion.2 This does not consider community service costs or indirect costs from losses in quality of life and productivity (these indirect costs are estimated to constitute the majority of the cost burden of epilepsy).3

Throughout the report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condition that develops later in life or in response to an injury or other health condition. These many complexities of the epilepsies make it a challenging health condition to convey to the general public to promote understanding


estimate for January 30, 2012, was 312,933,845; www.census.gov/main/www/popclock.html.) In the paper by Hirtz and colleagues (2007) the median for incidence, based on the four studies of all age groups, was 48 per 100,000; median prevalence rate for all age groups was 7.1 per 1,000.

2Data are in 2004 dollars. As discussed later in this chapter and in Chapter 4, estimates of the cost burden of epilepsy vary widely and more data are needed on the use of health care services and on indirect costs.

3Begley et al., 2000; Gaitatzis et al., 2004; Hauser et al., 1980; Hesdorffer et al., 2011; Hirtz et al., 2007; Thurman, 2011; Thurman et al., 2011; Tomson et al., 2008; Yoon et al., 2009.

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