For the Media:

Survey: Beliefs about Epilepsy among Hispanics a Significant National Health Issue

First Ever Survey of US Hispanics on this Issue Points to Greater Need for Education / Counseling of Families Affected by Seizures

Landover, Md., October 16, 2005 -- A national survey conducted for the Epilepsy Foundation and released today has found that a large proportion of Hispanics in the United States fear epilepsy, often attribute seizures to substance abuse and spiritual causes, and would most likely hide a family member who has the disorder. The survey, conducted in Spanish, revealed that one-fourth of Hispanics relate seizures to death, and just over one-half would not disclose that a family member has epilepsy, indicating a high degree of fear and stigma associated with the condition. These results, and the fact that Hispanics were found to be mostly unaware of epilepsy and retain many seizure myths, are of concern from a public health perspective because of the education and service delivery problems that such attitudes and beliefs are likely to present.

According to the report by lead author Joseph I. Sirven, M.D., of the Mayo Clinic College of Medicine, Scottsdale, AZ, and colleagues in the September issue of Epilepsy & Behavior, the study has important implications for neurologists and all health practitioners. "More time needs to be devoted to education and counseling during clinical visits with Latinos to debunk the myriad myths associated with the condition in order to lessen the burden of disease," says the report. "One must be prepared to bridge the cultural and language barriers that typify this patient encounter. The only certainty we have is that Latino patients with epilepsy or any neurological condition will be increasingly more commonplace regardless of the location of one's practice in the U.S."

A substantial future growth in the number of Hispanics with epilepsy is of particular concern to the Epilepsy Foundation. Currently, about one in seven Americans is of Hispanic heritage and the ratio will increase to one in four by 2050. Seizures are almost twice as common among Hispanics as they are in non-Hispanics, according to background in the report, due to cysticercosis (an infection endemic in many areas of Latin America from which people immigrate) and a higher incidence of birth trauma, head trauma and stroke in this population.

The telephone survey of 760 Hispanics was conducted in seven large U.S. metropolitan areas with major US Hispanic populations and accurately reflects a cross-section of the U.S. Hispanic population by country of origin. It was undertaken to identify, document, and quantify specific culturally based US Hispanic attitudes, beliefs, fears and understanding regarding seizures and epilepsy, the first such study to be conducted concerning epilepsy or any other neurological condition. A national cohort of 272 randomly selected non-Hispanics was also surveyed for comparison. The survey's 78-question instrument probed the respondents' awareness and general knowledge of epilepsy, its causes, treatment, and effects on daily life, and how respondents would react to someone who is experiencing a seizure.

Among common misconceptions that were found, nearly one-third of Hispanics (31%) believe that people with epilepsy cannot hold a job compared to 3% of non-Hispanics who retain this belief. The same number believes that people with epilepsy are dangerous to others, while half as many non-Hispanics (17%) agree, a belief that in both cohorts is disturbing.

A small but significant percentage of Hispanics (8–9%) – a segment that is relatively large in actual number – believes that people with epilepsy have a lack of intelligence or spiritual faith, that the disorder is contagious, and that it is caused by one's sins or by an evil spirit. Nearly one-third believe that seizures can be successfully treated with herbal remedies (30%), a spiritual healer or exorcism (6%), beliefs that could lead to significant delays in diagnosis, and many cases might go entirely undiagnosed causing unnecessary disability and social isolation.

The telephone survey was fielded in June 2004 by Hispanic Research, Inc., a provider of primary Hispanic research services based in East Brunswick, NJ, and conducted among adults aged 18 and above in randomly selected Hispanic households in Chicago, New York, Miami, San Antonio, Phoenix, San Diego and Los Angeles. The full report can be accessed on the Foundation's website or by calling (800) 332-1000.

About the Epilepsy Foundation

The Epilepsy Foundation, with national offices in metropolitan Washington, D.C., and 55 affiliates in 39 states, is the leading voluntary health organization with programs and services for nearly 3 million people in the United States with seizures. The organization's goals are increased research, more effective treatment, the elimination of social barriers, and access to quality care, so not another moment will be lost to seizures.