Change Our Epilepsy Story

Misinformation about seizures adds to negative outcomes and perception for people with epilepsy. Feelings of shame, judgement, or confusion can reduce quality of life even when seizures are well controlled.

Compared to other racial and ethnic groups in the epilepsy community, African American and Hispanic populations with epilepsy face additional obstacles when seeking care.

Talking about feelings of fear or shame and sharing our stories helps break down barriers. Take part in #ChangeOurEpilepsyStory to inspire your community.

Seizures and the Black Community

Many African Americans experience seizures and epilepsy, so receiving care is critical. Access to quality care helps with seizure control and improves daily life.

Reducing misconceptions about seizures encourages people to seek the care they need. While anyone can have a seizure, below are facts about seizures in the African American community.

• According to the U.S. Census Bureau and the Centers for Disease Control and Prevention (CDC), 578,000 African Americans have epilepsy or a seizure disorder.
• Over 25,000 African Americans are diagnosed with seizures or epilepsy each year. In fact, African Americans are more likely to be diagnosed with epilepsy than White Americans.*
• While African Americans with seizures and epilepsy are more likely to experience the critical issues mentioned above, they are less likely to experience active epilepsy than White Americans.* This means, African Americans are more likely to have seizures that are controlled by medication.

Seizures and the Hispanic Community

Hispanics are made up of diverse cultures and values. They are also one of many other ethnic and racial groups disproportionately impacted by health disparities.

• Epilepsy also affects more than 710,000 Hispanics in the U.S.
• In some Hispanic cultures, epilepsy may be perceived as contagious, or a mental or psychiatric condition adds to misunderstandings and delays in getting the proper treatment.
• Hispanics in the U.S. are less likely to have access to health insurance or an epilepsy specialist limiting their ability to get the proper seizure control.

Help us stop the stigma and participate in our social media campaign, #ChangeOurEpilepsyStory, to spread awareness in your community.