Epilepsy: One of the Nation’s Most Common Disabling Neurological Disorders

Epilepsy is a general term that includes various types of seizures. People with diagnosed epilepsy have had more than one seizure, and they may have had more than one kind of seizure. A seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness, or behavior.

Epilepsy and seizures affect about 2.3 million Americans, and result in an estimated annual cost of $12.5 billion in medical costs and lost or reduced earnings and production. People of all ages are affected, but particularly the very young and the elderly. About 10% of Americans will experience a seizure, and about 3% will have or will have had a diagnosis of epilepsy by age 80.

Living Well with Epilepsy, the first national conference on public health and epilepsy, convened in September 1997. The conference was cosponsored by CDC, the American Epilepsy Society, the National Association of Epilepsy Centers, and the Epilepsy Foundation. The conference cosponsors sought to

• Assess current knowledge about seizures and epilepsy.
  
  
• Identify critical gaps in scientific knowledge about epilepsy.
  
  
• Consider potential strategies for overcoming barriers to optimal health for people with epilepsy.

Participants collaborated on developing a list of priority epilepsy concerns ranging from researching the evaluation and care of patients having a first seizure to combating stigmatization and reducing disabilities associated with epilepsy. This list of priority concerns was the impetus for developing CDC epilepsy programs directed at improving care, improving communication, self-management, surveillance, and public awareness.

Seizures and Epilepsy: A Public Health Priority of the Centers for Disease Control and Prevention

Seizures

• A seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness, or behavior. A seizure can last from a few seconds to a few minutes. There are more than 20 different types of seizures.



• Symptoms experienced by a person during a seizure depend on where in the brain the disturbance in electrical activity occurs. Some seizures may be frightening to onlookers. A person having a tonic-clonic (grand mal) seizure may cry out, lose consciousness and fall to the ground, and have rigidity and muscle jerks. A person having a complex partial seizure may appear confused or dazed and will not be able to respond to questions or direction. Some people have seizures that are not noticeable to others. Sometimes, the only clue that a person is having an absence (petit mal) seizure is rapid blinking or a few seconds of staring into space.

Epilepsy

• Epilepsy is a general term for various types of seizures. People with diagnosed epilepsy have had more than one seizure, and they may have had more than one kind of seizure.

The Burden of Epilepsy

• About 2.3 million people in the United States have some form of epilepsy.
• For the vast majority of epilepsy cases, no single cause has been determined. Seizures may be caused by head trauma, stroke, brain tumor, poisoning, infection, inherited conditions, or problems during fetal development.
• Treatment methods control seizures for about 75% of the people with epilepsy. Antiepileptic drugs are the most common form of treatment. When medication is not effective, surgery may be. Another option is vagus nerve stimulation, a recently approved therapy in which an electrical device is implanted in the affected person's shoulder to periodically stimulate a cranial nerve. For persons with certain types of seizures, a special high-fat, low-carbohydrate diet may reduce seizures if other treatments do not work.

Key Public Health Issues

• The goal of eliminating seizures, while at the same time preventing side effects from treatment, is achievable for most people with epilepsy. However, organized systems of care are not in place to uniformly provide services and support that will ensure the best possible quality of life for people with epilepsy.
• Surveillance data on epilepsy are limited. Little research has been done on epilepsy, in particular on how the condition affects older adults.
• People with epilepsy often struggle to overcome low self-esteem and the stigma that is attached to having epilepsy. The stigma is due in part to a lack of understanding by people they see every day - family members, schoolmates, colleagues. Some people mistakenly believe that epilepsy is a form of mental illness or mental retardation, that seizures are something to fear, that drastic first aid measures must be taken to help someone having a seizure, or that people with epilepsy cannot be valuable and productive employees.

Activities of CDC's Epilepsy Program

Improving Care

With input from experts (including members of the American Epilepsy Society and the Epilepsy Foundation), CDC and the Agency for Healthcare Research and Quality have collaborated on developing a systematic method of evaluating the quality and quantity of research on the care of people with epilepsy. Evidence-based reports are being developed that will provide systematic assessments and syntheses of published scientific literature relating to the diagnosis, management, and treatment of people with epilepsy.

A bibliographic database on the self-management of epilepsy has been developed as part of a larger project to build systems within managed care that will improve health outcomes for people with a range of chronic conditions.

Many teenagers with epilepsy face unique challenges related to activities such as driving, school attendance, work, and dating. CDC is working with the Epilepsy Foundation and other partners on a communication campaign to provide adolescents with skills and information to help them make decisions about whether, with whom, and when to share information about epilepsy and seizures. CDC will also work with its partners to assess the needs of parents in assisting their children with epilepsy in taking appropriate responsibility for managing their condition.

Research

In order to develop and assess effective interventions that promote epilepsy self-management, it is important to have an accurate understanding of the challenges that people with epilepsy face in their everyday interactions with those around them. CDC is embarking on research to develop and test a tool to assess the public’s perceptions about people with epilepsy.

Despite the high prevalence of epilepsy in the elderly, relatively little is known about the impact of this disorder in older age. CDC will conduct research related to the quality of life of elderly persons with epilepsy.

Epilepsy Education and Prevention Activities information is provided as part of the Combined Health Information Database. Collection of this information began in 1994 and includes journal articles, monographs, technical reports, proceedings, papers, policy documents, legislation, unpublished documents, and curricular materials. Over 2,000 records are included in this collection.

CDC is working cooperatively with the Epilepsy Foundation to conduct activities in the areas of building partnerships, creating awareness, improving health communications, and offering consumer and provider education.

CDC will work to promote

• Timely diagnosis, effective management, and appropriate treatment for people with epilepsy.
• The development of programs and materials to combat the stigma, discrimination, and misplaced safety concerns related to epilepsy.
• Improvement in self-management by people with epilepsy.
• The ongoing systematic collection, analysis, and interpretation of health data necessary for designing, implementing, and evaluating public health programs related to epilepsy.

U.S. Department of Health and Human Services
Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention
and Health Promotion
Division of Adult and Community Health
 Mail Stop K-45
4770 Buford Highway, NE
Atlanta, GA 30341-3717