One of the Nation’s Most Common
Disabling Neurological Conditions
At A Glance
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“America has the capacity to prevent or mitigate
many of the adverse consequences
of epilepsy, but ambitious efforts and persistence are needed. The time to
act is now.”
Eric R. Hargis
President and CEO of the Epilepsy Foundation
Past chairperson of the National Health Council
Epilepsy: Widely Recognized, Poorly Understood
What Is Epilepsy?
Epilepsy is a chronic neurological condition characterized by recurrent
seizures. A seizure happens when abnormal electrical activity in the brain
causes an involuntary change in body movement or function, sensation,
awareness, or behavior. Seizures can vary from a momentary disruption of the
senses, to short periods of unconsciousness or staring spells, to
convulsions. Some people have just one type of seizure. Others have more
than one type. The term “epilepsy” can be used interchangeably with the term
“seizure disorder.” Epilepsy is not contagious and cannot be transmitted
from person to person.
What Causes Epilepsy?
Epilepsy can occur as a result of many different conditions that affect a
person’s brain. Examples of these conditions include stroke, head
during childbirth, infections (such as meningitis, encephalitis, cysticercosis, or brain abscess), and certain genetic
disorders. Often, no definite cause can be found.
Why Is Epilepsy a Public Health Problem?
Epilepsy affects an estimated 2.7 million people in the United States and
costs about $15.5 billion in medical costs and lost or reduced earnings and
productivity each year. More than one-third of people with epilepsy continue
to have seizures despite treatment. Each year, about 200,000 new cases of
epilepsy are diagnosed in the United States. Children younger than age 2
years and adults older than 65 years are most likely to be affected. In
addition, people of low socioeconomic status, those who live in urban areas,
and members of some minority populations are at increased risk for epilepsy.
Delayed recognition of seizures and inadequate treatment greatly increase
a person’s risk for subsequent seizures, brain damage, disability, and death
from injuries incurred during a seizure. Epilepsy is a widely recognized
health condition, but one that is poorly understood, even among people who
know someone with the disorder.
Lack of knowledge about the causes of epilepsy has been associated with
negative attitudes, beliefs, and stigma. Lack of understanding about
epilepsy is a leading cause of discrimination in the workplace and in
What Can Be Done to Improve the Lives of People With Epilepsy?
The second National Conference on Public Health and Epilepsy, titled
Living Well With Epilepsy II, brought together experts in the field, as well
as people with epilepsy and their families. Participants discussed the need
for early recognition, diagnosis, and treatment of epilepsy; advances in
epidemiology and surveillance; better self-management; and improved quality
Conference participants also called for
- Better access to specialty care and comprehensive systems of care,
as well as improved early detection and treatment of seizures.
- Established criteria to determine quality of care in epilepsy.
- Better understanding of the diagnosis and treatment of the
consequences of epilepsy, especially in the areas of mental health and
- Systems and models of care that foster empowerment and independence
for people with epilepsy and support their efforts toward improved
seizure control and a good quality of life.
- Methods and systems to monitor trends related to critical issues,
such as disease burden, mortality risks, and incidence and prevalence in
- Research and communication approaches that will combat the stigma
associated with epilepsy, which will improve community awareness and the
quality of life and care of people with epilepsy.
- Public education to improve people’s ability to recognize seizures
and give first aid.
[A text description of this map is also available.]
CDC’s National Leadership
CDC is committed to ensuring that all people, especially those at greater
risk for health disparities, will achieve their optimal lifespan with the
best possible quality of health in every stage of life. With agency-wide health
protection goals that support healthy people in healthy places across all
life stages, CDC is setting the agenda to enable people to enjoy a healthy
life by delaying death and the onset of illness and disability by
accelerating improvements in public health.
Over the past 13 years, CDC’s Epilepsy Program has steadily increased its
ability to effectively address public health issues related to epilepsy. The
program works to protect the health of people living with epilepsy, improve
their quality of life, and decrease the stigma associated with this
disorder. To achieve these goals, the program has established national and
local partnerships to increase public awareness and deliver targeted
educational messages. The Epilepsy Program supports activities in several
key areas, including communication and education, research, and
Communication and Education
CDC has worked with the national Epilepsy Foundation for several years
to conduct multifaceted public education and awareness campaigns. These
campaigns are designed to increase awareness about and acceptance of people
with epilepsy and to counteract the social stigma associated with this
disorder through education and community programs.
Past campaigns have focused on underserved population groups, including
African Americans, women, and young people. The 2006–2007 campaign
addressed the needs of Hispanic and African American communities. Campaign
activities included the following:
- Providing basic information about epilepsy to the Hispanic community
through national and local partnerships.
- Providing Epilepsy Foundation affiliates with tools and resources to
reach local Hispanic communities.
- Creating a needs assessment and evaluation system to measure the
effectiveness of campaign components.
Messages were aired on 210 Spanish-language radio stations, and articles
were sent to 97 Spanish-language newspapers, reaching as many as 25 million
people. Epilepsy information also was widely distributed at national
conferences targeting the Hispanic community and through publications
targeting African Americans.
In addition, CDC developed a tool kit called No Label Required for
teenagers with epilepsy to help them make informed decisions about issues of
greatest concern in their lives. Building on the success of this tool kit,
CDC, in collaboration with the Epilepsy Foundation, developed and tested an
award-winning tool kit for parents called You Are Not Alone: Toolkit for
Parents of Teens with Epilepsy. Tool kit components are designed to
empower and support parents while encouraging their teenagers toward
self-management. The tool kit includes a letter to parents, a brochure, a
resource guide, an audio-cassette, stationery, and a videotape with a user’s
guide. All materials are available on the Internet at http://www.cdc.gov/
epilepsy. Both tool kits have been distributed in traditional and
nontraditional ways, including at summer camps and schools, on Web sites, as
part of educational campaigns, and through Epilepsy Foundation affiliates.
[A text description of this map is also available.]
Epidemiologic and Prevention Research
CDC supports epidemiological studies to define the incidence and
prevalence of epilepsy in different U.S. racial and ethnic populations.
These studies are being used to identify 1) risk factors and the severity of
epilepsy in minority communities, 2) health disparities and contributing
factors among people with epilepsy, and 3) process and outcome measures that
may be used to define optimum care for epilepsy.
Nineteen state health departments have used Behavioral Risk Factor
Surveillance System (BRFSS) surveys to collect data on self-reported
epilepsy prevalence and associated behavioral risk factors, chronic disease
comorbidity, and health-related quality of life (see map, page 3). In
addition, CDC is conducting research on the prevalence of self-reported
epilepsy in California using the California Health Interview Survey (see
chart, page 2).
CDC also is supporting population-based studies of epilepsy incidence and
prevalence and assessing the relationships between demographic variables,
socioeconomic status, health care use, cost, and outcomes in different
population groups in Texas, New York City, South Carolina, rural Kansas, and
the District of Columbia, and along the underserved Arizona-Mexico border.
Self-Management and Mental Health
Improving the ability of people with epilepsy to better manage the
disorder is a priority for CDC. In 2007, researchers worked to develop and
test a computer-based, theory-driven epilepsy self-management program for
adults, including veterans with epilepsy. They also were working to develop
and test home-based interventions for treating depression in people with
epilepsy and to examine the stigma associated with epilepsy and mental
illness in collaboration with the Substance Abuse and Mental Health Services
CDC will continue to collaborate with the Epilepsy Foundation to expand
education and awareness programs that target different groups, including
racial and ethnic minorities, students and staff of middle schools and high
schools, parents of teenagers with epilepsy, and police and emergency
responders. CDC also will refine its focus on older adults with epilepsy by
developing and implementing educational programs that target the public and
health care providers. New program initiatives will seek to identify 1)
issues, priorities, and strategies necessary to address sudden unexplained
death in epilepsy and 2) ways to support young people with epilepsy as they
move into the workforce.
In addition, CDC will continue to analyze epilepsy data from BRFSS
surveys and to work with state health departments and the Epilepsy
Foundation to add questions about epilepsy and seizures to future surveys. A
new initiative will examine associations between epilepsy and psychological
distress in adults participating in the California Health Interview Survey.
CDC also will continue to collaborate on research projects with the
Association of American Medical Colleges and the Association of Schools of
Public Health to increase knowledge in the following areas:
- The epidemiology of epilepsy, specifically the incidence and
prevalence, risk factors, and severity of this disorder among minority
populations in the United States.
- The prevalence of epilepsy, patterns of care, and health outcomes
among older Americans.
- Health disparities and factors that contribute to health disparities
among people with epilepsy.
CDC’s Epilepsy Program will continue to work with the Prevention Research
Centers (PRC) to fund a coordinating center and a collaborating center to
create a network of PRCs for epilepsy self-management intervention research.
The Managing Epilepsy Well (MEW) network will develop and implement a
coordinated, applied research agenda; conduct research activities that
promote self-management and quality of life; and identify and collaborate
with state and local public and mental health agencies, as well as with
other social services agencies, to implement activities.
For more information please contact
Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
4770 Buford Highway NE, Mail Stop K–51, Atlanta, GA 30341-3717
Telephone: 770-488-5464 • Web:
Page last reviewed: February 11, 2008
Page last modified: February 11, 2008
Content source: National Center for
Chronic Disease Prevention and Health Promotion