Mission and Goals

Overview

More than one million American women and girls are living with seizure disorders. Women with epilepsy face many unique challenges. Hormonal changes during the monthly cycle may trigger seizures. Women considering pregnancy frequently receive inappropriate, even harmful, advice from health care providers. Social factors leave them vulnerable to discrimination and abuse. Yet, their plight and the manner in which they are affected by this chronic medical condition have been largely ignored.

As an important part of the Epilepsy Foundation's role in advocating for an improved quality of life for ALL people with seizure disorders, we are committed to addressing the unique health concerns of women with epilepsy.

The Issues

Seizures often begin in puberty, intensifying what for young women is one of the most difficult times in their lives.

Adult epilepsy often involves areas of the brain that are sensitive to the effects of reproductive hormones.

Seizures, and especially the medications that control them, present a variety of risks to pregnant women and their babies.

Seizures that begin at menarche may improve at menopause - or may become worse. The factors influencing either outcome are unknown.

Despite their importance to women's health, the role of hormones as a contributing cause or treatment for epilepsy has received very little systemic investigation.

What little research has been done supports what women have been saying for years -- namely, that seizures are worsened by hormonal swings in the monthly cycle.

For women, patient care may be compromised because these issues are not widely researched or understood. Despite the fact that half the people who have epilepsy are women, practically all the research on this condition has involved men.

The Mission

Given this background, the Epilepsy Foundation is committed to combating the unique problems of ALL women and girls with epilepsy through targeted research, improved medical care and greater understanding in the community.

The Goals

The Initiative has four primary goals:

Empower women with epilepsy to improve their own health care and develop a network of mutual support to help them cope with the condition and its impact on their lives.

Create awareness among health care providers of the difficulties confronting women with epilepsy and improve the quality of care they receive.

Improve public understanding of epilepsy, its impact on the lives of women and their families, and generate support for programs and services needed to assist them.

Stimulate scientific interest in the unique problems of women with epilepsy and generate support for research into the causes and solutions to these problems.

The Campaign

The Women and Epilepsy Initiative is a campaign to bring hope and help to women with epilepsy. The project is divided into initiatives to break down community and institutional barriers.

The community initiative will provide the information and support that women with epilepsy need to work more effectively with their health care providers to manage the effects of epilepsy in their daily lives. Enhanced awareness of epilepsy and its impact on women will improve public understanding and help alleviate the psychological and social consequences that women with epilepsy face.

Information Materials

Information sheets on the specific issues that impact women with epilepsy.

A question & answer brochure on epilepsy and pregnancy.

A handbook on treatment options for women with epilepsy.

Community Support

Grants awarded in selected communities to develop women's support and advocacy networks that can be replicated throughout the nation.

National Campaign for Women's Health

A multimedia campaign to improve public understanding of epilepsy, its impact on the lives of women and their families and to generate support for needed research and programs. The second initiative targets the scientific and provider communities. The goal is to stimulate scientific interest in the issues, generate support for research into causes and solutions, and sensitize and educate health care providers about the difficulties confronting women with epilepsy.

Health Awareness

A multi-faceted campaign to raise awareness about the issues affecting women with epilepsy, targeting women's health care providers.

Provider Education

Educational materials and learning tools for health care providers.

Research Support

Direct support of research on issues affecting women with epilepsy.

Advocate for increased funding of gender-specific research in the public sector.