Raise Awareness, Improve Education
Education for people with epilepsy and their families plays an important role in adapting to life with epilepsy, developing self-confidence, and competently managing the disorder and its associated health conditions. The committee recommends that educational opportunities be expanded and improved through the evaluation and updating of epilepsy websites and educational resources, among other efforts designed to increase knowledge and skills relevant to living with epilepsy.
Public misperceptions and misinformation about epilepsy have persisted over centuries. Inaccurate or sensationalized depictions of people with epilepsy, often used for dramatic effect in the entertainment media, have reinforced negative perceptions. To raise public awareness and reduce stigma, ongoing efforts are needed, using clear messages and diverse activities targeted to specific audiences through multiple media, including social media and the Internet.
Strengthen Stakeholder Involvement
Currently, a number of organizations are engaged in efforts to advance research, improve health care and human services for people with epilepsy and their families, and increase knowledge about the disorder. Vision 20-20, a collaborative effort of more than 20 nonprofit organizations and 3 federal agencies, focuses its actions on moving the epilepsy field forward. The committee urges further partnerships and expanded efforts by working groups within Vision 20-20.
Among the most persuasive advocates and educators are people with epilepsy and their family members. Individuals who are willing to speak out can provide a more complete picture of the disorder and its impact. While many people may be willing to play such a role, training and support will help them do so more effectively. People with epilepsy and their families also have the opportunity to advance knowledge about epilepsy and its treatment when they participate in clinical research, surveys, and other studies that investigate ways to improve care and increase understanding of how epilepsy affects individuals’ lives.
Given the current gaps in epilepsy knowledge, care, and education, the committee believes there is an urgent need to take action—across multiple dimensions— to improve the lives of people with epilepsy and their families. The committee provides research priorities to further develop the evidence base, and it recommends realistic, feasible, and action-oriented steps for a variety of stakeholders to enable short- and long-term improvements for people with epilepsy.