Epilepsy Affects 1 in 26, More Funding For Research Needed
According to recent research presented by the American Academy of Neurology, about 12 million Americans will develop epilepsy in their lifetime, with the risk increasing as the population ages. However, this figure may not be entirely accurate, as the data used to calculate lifetime risk is 30 to 50 years old. Dr. Edwin Trevathan stresses that the disease is not getting enough funding for research and there is no current ongoing collection of data or central registry on newly diagnosed cases.
Over a Lifetime, One in 26 Will Develop Epilepsy
Dr. Dale C. Hesdorffer PhD of Columbia University and colleagues examined data from residents of Rochester, Minnesota between 1960 and 1979 to determine the lifetime risk of epilepsy, a brain disorder involving repeated and spontaneous seizures. The study was supported by the National Institute for Neurologic Disorders and Stroke and the National Institutes of Health.
In the community, 412 individuals were diagnosed with epilepsy during the study period. Up to age 50, the lifetime risk of developing the condition was 1.6%, but this increased to 3.0% as the population reaches age 80. The risk increases further to 4.2% at age 87. Men are more likely than women to develop epilepsy.
The data, published in the journal Neurology, leads the researchers to conclude that 12 million people in the United States – or one in 26 - will develop epilepsy sometime in their lives, up from the previous estimation of 3 million Americans by the National Epilepsy Foundation.
Unfortunately, the data from the study may still underestimate the lifetime risk, particularly for males, as the life expectancy in the US has risen. “The authors did the best analysis possible with the data available,” says Dr. Trevathan who writes in an accompanying editorial, “But these data from a long-past era of epilepsy classification, diagnosis, and care may not reflect the current reality of neurology practice.”
This lack of surveillance data has lead to a lack of public attention and less funding for research than the condition actually deserves, argues Dr. Trevathan. He says the narrowly focused funding lines from Congress to the CDC are one cause of the inadequate epilepsy data. Also, what funding has been received has gone toward awareness campaigns instead of setting up the appropriate infrastructure for surveillance.
“Epilepsy has a major impact on public health. A national approach to monitoring epilepsy trends is desperately needed in order to monitor the impact of improvements in epilepsy care, to identify problems with epilepsy care that need to be corrected, and to provide up-to-date data for researchers,” said Trevathan.
Hesdorffer DC, et al "Estimating risk for developing epilepsy: A population-based study in Rochester, Minnesota" Neurology 2011; 76: 23–27.
Trevathan E "'Flying blind' without epilepsy surveillance data" Neurology 2011; 76: 10–11.