• REN

Black Americans and Rare Epilepsies


Black History Month is celebrated all throughout February. The purpose of this month is to honor African Americans from every time period, and spotlight their many achievements and triumphs. The Black History Month 2022 theme is “Black Health and Wellness. ” Currently, 375,000 African Americans have active epilepsy and 25,000 new cases are diagnosed each year. Some of these new diagnoses include rare epilepsies.


Generally, there is less understanding and knowledge about epilepsy within minority groups. In fact, a 2005 study showed that the lack of knowledge and misconceptions regarding epilepsy within the African American community increased the stigma burden on African Americans with epilepsy. In addition to the gaps in knowledge, there are notable differences in epilepsy statistics relating to African Americans versus other demographic groups.

  • African Americans are more likely to experience status epilepticus, a medical emergency in which a seizure continues for 5 minutes or more without stopping

  • African Americans are at increased risk for Sudden Unexpected Death from Epilepsy (SUDEP)

  • African Americans are more likely to develop epilepsy over a lifetime than white Americans


Following are upcoming events and resources to close the current knowledge gap regarding epilepsy in the African American community.


Upcoming Events:

Both programs are recorded and also available afterwards.


Resources:

Epilepsy Foundation

  • General background information regarding African Americans and epilepsy here

  • Seizure First Aid Training Information and Resources here and here.

  • Seizure Training for School Personnel Information and Resource Page here

  • An explanation of Developmental and Epileptic Encephalopathy (DEEs) here

  • Epilepsy Prescription Assistance here

Rare Epilepsy Network (REN)

  • If you are diagnosed with a rare epilepsy, find a community of others with your diagnosis for information, education and support among REN’s 80+ rare epilepsy organizations here


If you are aware of other valued resources or to provide updates or correct errors, please contact: info@rareepilepsynetwork.org.


Disclaimer: All resources are provided as a courtesy. We are not endorsing any organizations or providing medical advice.

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