The Scope of Epilepsy and Seizures in the United States

According to most recent estimates, seizures and epilepsy will develop in 200,000 otherwise healthy Americans of all ages this year. In 1995, the last year for which complete data are available, 2.3 million Americans had been diagnosed with epilepsy, had been taking anticonvulsant medication for at least five years, or had experienced an unprovoked seizure (a seizure not associated with an acute nervous system insult such as high fever, infection or head trauma). Of these 2.3 million, 1.4 million were adults aged 15 to 64 years and 550,000 were citizens aged 65 and over. Most poignant, 300,000 were children aged 14 years and younger-children in the prime of life and at a crucial stage in their educational and social development. (Extrapolating to 2004 population figures, almost 3 million Americans now have epilepsy.)

The severity of epilepsy varies from person to person. In an ongoing study sponsored by the Epilepsy Foundation on the impact of epilepsy and the cost of the illness, several distinct patient groups were identified. In about 60 percent, no additional seizures occurred after one year. In an additional 15 percent, several seizures occurred over time, but eventually ceased.

And in an unfortunate subset, amounting to about 40 percent of the total epilepsy population, seizures persist despite treatment and are considered intractable.

Ineffective treatment, delayed or lack of access to high-quality, specialized care, and the severity of the underlying neurological disorder are all possible contributors to the development of hard to control seizures. Whatever the cause, the result is the same: a lifetime of dependence, enormous cost to society, and a formidable barrier to individual productivity and happiness.

Although seizure disorders strike all demographic groups, the prevalence is higher among minority populations living in poverty than among the general population. It is not known whether this discrepancy is due to racial variations or socioeconomic factors. Death rates are also elevated in people with epilepsy, especially when seizures are not controlled.

Despite their many problems, however, people with epilepsy struggle to live normally, and may indeed minimize the difficulties with which they are faced. Some research evidence suggests people with epilepsy have low expectations for their medication regimens. In a survey conducted among people with epilepsy, 50 percent of the respondents stated that their disorder was in "good" control, even though 25 percent of them had experienced a seizure within the previous year. In fact, only 13 percent of this group had experienced a seizure-free interval of more than one year. In 37 percent, the longest time without a seizure was three months; 22 percent had a reprieve of one month;10 percent had gone one week without seizure activity; and 4 percent reported that their longest seizure-free interval was one day. Their experience -- and their stoic acceptance of it -- contrasts sharply with the stated goal of epilepsy therapy: the elimination of all seizures.

(From Epilepsy: A Report to the Nation. Published in 1999 by the Epilepsy Foundation)