Epilepsy is a neurological condition that makes people have seizures. Around 65 million people worldwide have the condition, and it affects people from all ethnic backgrounds. In the United States there appears to be racial differences in the experience of epilepsy.
Around 637,000 African Americans have been diagnosed with epilepsy at some point in their lives - representing about 1.4% of the country’s Black population. This is a similar proportion to the number of people with epilepsy more generally.
There are conflicting reports about the Black experience of epilepsy in the US. Some studies have found quite significant racial disparities, suggesting that African Americans with epilepsy have worse health outcomes than other ethnic groups. But other studies found relatively little difference.
Here's what we know about epilepsy in the African American community.
African Americans’ experience of epilepsy
What do we know about the African American experience of epilepsy? Here are some key findings from various studies:
- 375,000 African Americans have ‘active’ epilepsy - which means they've had a seizure in the last year or are taking medication, and 20,000 African Americans are diagnosed with epilepsy each year.
- African Americans are more likely to be diagnosed with epilepsy over their lifetimes than Caucasians - although they are less likely to be diagnosed with seizures than Hispanics (according to the Epilepsy Foundation).
- African Americans are less likely to have Generalized Epilepsy than Caucasians.
- African Americans are more likely to have long seizures (of 10 minutes or more) – also known as status epilepticus - and are more likely to visit an emergency room than other groups.
- Black men with epilepsy are the most likely group to be affected by SUDEP (Sudden Unexpected Death in Epilepsy).
- African Americans may be less likely to receive anti-epileptic drugs or comply with prescriptions, and they are also less likely to undergo epilepsy surgery.
Other studies, have found that there is little to no racial disparity in epilepsy care and outcomes among African Americans compared to other groups. Many of the studies on racial groups and epilepsy in the US have been fairly small in size, or focused on one particular region or city. This makes it difficult to generalize for the whole country.
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What might explain these disparities?
Given the long history of racism against African Americans in the United States, it seems likely that discrimination might play a role in these disparities - although studies don’t appear to have found a direct causal link. Other possible reasons for these disparities include:
- Socio-economic disadvantage: Treatment outcomes for people from lower income backgrounds with epilepsy tend to be worse than for those with higher incomes. A higher proportion of African Americans live in economically deprived areas so this could partly explain the difference (the fact African Americans live in more deprived areas is, of course, closely linked to racism).
- Access to services may be limited: African Americans are more likely to live in areas with less access to healthcare and medical support than people from other ethnic groups. Also, fewer African Americans have private health insurance, which may also reduce their access to epilepsy care.
- Knowledge and education: Some researchers have reported that there is less awareness of epilepsy in the African American community, which could mean diagnosis is delayed.
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Improving epilepsy outcomes for African Americans
Everybody deserves to live seizure free, yet as some of the studies noted above show, African Americans appear to face more challenges when it comes to managing epilepsy than other groups. By working with your healthcare provider – and getting a second opinion if necessary – you can get the care you need.
As Deavin Arnold-Hadley, an African-American mother from Indiana whose child has epilepsy told the Washington Informer: “I would encourage the Black community to make sure that you have a health care provider that wants to work with you; do not be afraid to speak up and advocate for yourself or a loved one that you care for.”