Epilepsy Foundation’s Pilot Campaign Addresses Stigma Associated with Epilepsy in the Hispanic and African American Communities

Campaign Focused in Phoenix and Philadelphia

The Epilepsy Foundation today launched a pilot campaign, with support from the U.S. Centers for Disease Control and Prevention (CDC), to reduce the stigma that people with epilepsy, and their caregivers, experience because of their epilepsy. The campaign, #ChangeOurEpilepsyStory, aims to get people to start talking about their epilepsy experience and seizures so that others will be empowered to seek help and achieve better outcomes. The Foundation is rolling out the campaign in Phoenix to reach Hispanics, and in Philadelphia focused on African and Black Americans.

“Oftentimes, misconceptions and negative attitudes about epilepsy can lead to people with epilepsy and their families feeling stigmatized and unwilling to talk about their seizures or epilepsy. The impact can be particularly intense for people who come from a racial or ethnic minority background,” said Brandy Fureman, Ph.D., chief outcomes officer, Epilepsy Foundation. “This sense of stigma generally steers people in our community toward silence and away from the motivation to seek care. Our goal with the campaign is to shift the conversation toward education, safety, and finding support and cures so that people in our community experience better health outcomes.”

Anyone can develop epilepsy, but its impacts are more severe for some than for others. According to the U.S. Census Bureau and the CDC, 578,000 African and Black Americans have epilepsy or a seizure disorder. Among Hispanics in the U.S., 710,000 are affected by epilepsy. Lack of information and cultural beliefs about epilepsy often contribute to difficulty with diagnosis, and even failure to follow a treatment plan to control the seizures.

The campaign includes digital ads in English and Spanish, as well as TV and radio public service announcements. In addition, the Epilepsy Foundation is collaborating with its affiliate partner, Epilepsy Foundation of Eastern Pennsylvania, to extend the reach of the campaign in Philadelphia.

The Epilepsy Foundation plans to expand the campaign to other parts of the country later this year. To download the campaign ads and get resources and services locally, visit epilepsy.com/ChangeOurStory.

About Epilepsy

According to the World Health Organization, epilepsy is a world health priority and the most common serious brain disorder, with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. Epilepsy is the underlying tendency of the brain to produce seizures, which are sudden abnormal bursts of electrical energy that disrupt brain functions. One in ten people will have a single seizure in their lifetime, and 1 in 26 people will be diagnosed with epilepsy.

About the Epilepsy Foundation

With a network of partners throughout the United States, the Epilepsy Foundation is leading the fight to overcome the challenges of living with epilepsy. The Foundation connects people to treatment, support, and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding epilepsy research and supporting epilepsy investigators and specialists in their early careers. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 600,000 people in seizure recognition and first aid. The Epilepsy Foundation has also assisted more than 140,000 people through its 24/7 Helpline, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000 or 866.748.8008 (en español). Follow us on Facebook, Twitter, Instagram, LinkedIn, TikTok and YouTube.