February is dedicated as Black History Month to recognize both the adversity and achievements experienced by the Black community in the United States. This year and every year, the Epilepsy Foundation is working to stop the fear and misconceptions about epilepsy within the Black community to support better health for all Black and African Americans. Unfortunately, African Americans with epilepsy are more likely to face discrimination and problems with access to care compared to other members of the epilepsy community.
Epilepsy 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.
More than 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. African Americans are also more likely to experience a seizure which continues for five minutes or longer without stopping (status epilepticus.) Black Americans also have a higher rate of Sudden Unexpected Death in Epilepsy (SUDEP).
However, African Americans are more likely to have seizures that are controlled by anti-seizure medication. By improving access to care and education about seizures, we can help more members of the Black community experience seizure freedom and better seizure control.
The Epilepsy Foundation’s Multicultural Outreach Program is making a difference by raising awareness of health inequities faced by individuals living with epilepsy, especially among multicultural communities. The program has established partnerships with Historically Black Colleges and Universities (HBCU), the National Medical Association (NMA), the National Association of State Offices of Minority Health (NASOHM), and more to increase awareness of epilepsy disparities among African Americans. Health communication campaigns have been included in several Black media outlets, such as ESSENCE magazine, Black Press newspapers, and others.
Challenges Faced by African Americans with Epilepsy
What are social determinants of health? These are factors that influence health outcomes and shape our daily lives, such as conditions in which people are born, grow, work, live, and age.
For the Black community, many external factors can affect epilepsy management. Many Black Americans do not have access to an epilepsy center. As a result, diagnosis and treatment often happen in emergency rooms. While emergency room care can be successful, it is better for people with frequent seizures to have access to a specialist that can better serve their needs.
Additionally, existing biases in medical systems can lead to mistreatment of African Americans. Due to this, the Black community is less likely to seek care from doctors when they really need it. This is because their concerns may often be dismissed. Black Americans are also underrepresented in neurological care. Only around 5% of neurologists are Black. Lack of representation in the neurological field may also contribute to hesitation when looking for treatment answers.
Serious issues such as bias need to be addressed to help minority populations living with epilepsy. The healthcare system is working to improve healthcare communication through the CDC’s Healthy Equity Principles for Inclusive Communication. This emphasizes the importance of addressing all people inclusively and respectfully.
How Can We Spread Education and Awareness About Epilepsy?
This February, there are ways for you to get involved and educate others about the importance of seizure safety in the Black community.
Sign Up for Seizure First Aid Training
Seizure Recognition and First Aid Certification Training increases your skills and confidence in recognizing seizures and safely administering first aid. People who complete the course will receive a two-year seizure first aid certification. In honor of Black History Month, we encourage you to join our live seizure first aid training on Tuesday, February 7, 2023, at 4:00 p.m. ET.
Register for the Black Men, Epilepsy & Stigma Webinar
The Black Men, Epilepsy and Stigma Webinar on February 21, 2023, at 3 p.m. ET will feature Black males living with epilepsy who will share their lived experiences, including interactions with law enforcement while experiencing a seizure. The webinar will also feature perspectives from men's health advocates.
Many African Americans have developed post-stroke seizures (PSS) as a common complication of strokes. Learn the warning signs of a stroke as another first aid tool related to seizure management. A person who has a stroke and then begins having seizures months or even years after may later develop epilepsy.
Our Epilepsy in the African American Community brochure addresses myths and provides facts about epilepsy, seizure first aid, and more.
Become an advocate for the epilepsy community to help end epilepsy-related discrimination, promote public health education, and protect the rights of people with disabilities.
Finally, connect with the Epilepsy Foundation or a local office to receive additional resources.