Bringing Hope and Health to Women with Epilepsy: An Interview with Elizabeth Borda, Director of the Women and Epilepsy Initiative at the Epilepsy Foundation
The following article is taken from a piece by the Clinical Nursing Practice in Epilepsy. NWHN worked with the Epilepsy Foundation this past fall to distribute mailings on women with epilepsy.
Epilepsy complicates every aspect of a woman's life. The woman with epilepsy faces medical, legal, social, educational, and economic challenges. Few chronic illnesses carry the impact of seizures of sudden onset. "Women with epilepsy are less likely to be employed or married than their counterparts without epilepsy. They suffer discrimination in the courts, and higher levels of physical abuse. That is why the scope of WEI [the Women and Epilepsy Initiative] must go beyond the affected women, their families, and health care providers," explained Elizabeth Borda, director of the special initiative. Despite the widespread detrimental effects of epilepsy, neither the medical nor social aspects affecting women have been sufficiently recognized or addressed. This is why the Epilepsy Foundation has developed the Women and Epilepsy Initiative (WEI)," said Borda. WEI is a comprehensive program of public and professional education designed to raise awareness of epilepsy and its effects on women throughout the life cycle.
Achieving the Goals of WEI
WEI will bring hope and help to women with epilepsy by providing information to make informed decisions about medical care and lifestyle choices, and by stimulating scientific research to study and solve their unique problems. To accomplish this, key objectives have been established: a gender-specific research agenda and educational programs aimed at women with epilepsy, the general public, and providers of women's health care.
A Broad-based Research Agenda
As NWHN supporters know, women have been underrepresented in drug development, clinical trials, and medical management, which has adversely affected the diagnosis, medical care, and quality of life for all women. WEI aims to close this gap for women with epilepsy by seeking funding for senior level research with defined clinical outcomes. "Investigators with a current or potential interest in epilepsy research relevant to women are encouraged to register with the Epilepsy Foundation," said Borda. A mailing list is being compiled for those interested in information regarding research grants (see contact information for the WEI).
Targeting Women with Epilepsy
The Epilepsy Foundation has developed a series of Information Sheets for women with epilepsy. Women who request Information Sheets also receive parallel sheets written for their providers. "These materials are being developed by the WEI Professional Advisory Group, chaired by Patricia Osbome Shafer, RN, NM of Beth Israel Hospital in Boston, MA. Group members include Martha Morrell, MD, Mark Yerby, MD, MPH, and Andrew Herzog, MD, three of the leading researchers in the field of epilepsy and women's health," Borda emphasized. The Epilepsy Foundation has developed Information Sheets on the following topics:
• Epilepsy and Pregnancy (implications for mother)
• Epilepsy and Pregnancy (implications for child)
• Hormone-sensitive seizures
Future Information Sheets will address hormone replacement therapy, menopause, and breastfeeding, among others. An informative brochure, including reply card, will explain the Initiative and inform women how they can become involved.
A handbook on treatment options for women with epilepsy is in the production phase. The book is being edited by Martha Morrell, MD, of Stanford University School of Medicine and published by Cambridge Press. NWHN is glad to assist WEI's many outreach efforts for awareness on women and epilepsy, the Information Sheets and the future video. To obtain copies of the Information Sheets, please see the WEI contact information.
Raising Public Awareness
WEI's Public Awareness Campaign seeks to educate the general public via print, radio, cable, and television. Part of the campaign is 'We Are Women,' a 30-second public service announcement released during epilepsy month that underscores the need for more research on health issues for women with epilepsy, and introduces the Epilepsy Foundation's Campaign for Women's Health.
By raising awareness of the many issues faced by women with epilepsy and disseminating useful and accurate information, WEI aims to cultivate public support and demand for research and educational programs.
To support the awareness campaign, an informal speakers' bureau is being formed, according to Borda. "Health professionals with expertise in this area who are interested in giving presentations should contact us. We are identifying speakers that are needed to address lay audiences and consumer groups, as well as health care providers."
Targeting Health Care Professionals
The Professional Awareness Campaign will target providers of primary care for women, rather than neurologists. Similarly, the nursing education program will extend beyond neurology. Women's health professionals will be surveyed to assess their perception and understanding of the issues faced by women with epilepsy. Documentation of the levels of awareness will provide the basis for designing appropriate professional educational programs.
Future plans include the development of professional education materials and sponsorship of conferences to be promoted to organizations representing nurse practitioners, ob-gyns, and other women's health professionals.
For further information on WEI, the speakers' bureau, and the Information Sheets, or if you are currently conducting epilepsy research, contact Elizabeth Borda, Director of WEI. 4351 Garden City Drive, Landover, MD 20785-2267 or firstname.lastname@example.org or (301)459-3700x623.