Epilepsy and Seizures in Black Adults: Care Gaps to Know

Epilepsy is a brain condition defined by recurrent unprovoked seizures, meaning two or more seizures that are not caused by a fixable trigger like low blood sugar or alcohol withdrawal. About 1.2 percent of US adults, roughly 3 million people, have active epilepsy. Most can control seizures with medication. The problem for Black adults is rarely the disease itself. It is the care around it: fewer referrals to epilepsy specialists, less access to surgery that can end seizures, and more reliance on the emergency room.

A seizure is a burst of abnormal electrical activity in the brain. The kind most people picture, where someone falls, stiffens, and shakes, is a generalized tonic-clonic seizure. It is not the only kind, and missing the others is part of why diagnosis gets delayed.

Focal seizures start in one part of the brain. The person may stay awake but stare, repeat a movement like lip-smacking or picking at clothes, feel a sudden wave of fear or a strange smell, or lose awareness for a minute or two without falling. Generalized seizures involve both sides of the brain from the start and include the convulsive type plus brief absence seizures, where someone blanks out for a few seconds. Some seizures are non-convulsive, with no shaking at all, just confusion or unresponsiveness, which is easy to mistake for a behavioral problem, intoxication, or a stroke.

In many adults, no cause is ever found. When there is one, the common drivers are stroke, head injury, brain infection, brain tumors, and problems present from birth. Stroke is the leading cause of epilepsy that begins later in life, which matters because Black adults have stroke earlier and more often than White adults. If you have had a stroke or a serious head injury and start having seizures, the connection is worth raising with your doctor. For warning signs, see our guide on stroke symptoms in Black adults.

Black adults with epilepsy get measurably different care, and the differences run through every stage of treatment. They are less likely to see an epilepsy specialist and more likely to land in generalist visits, the emergency department, and the hospital. That pattern is linked to worse seizure control, because seizure freedom is higher among people who reach a specialist.

Epilepsy surgery can cure drug-resistant focal epilepsy in carefully selected patients, yet it is one of the most underused treatments in medicine, and the gap by race is stark. A national analysis from 2006 to 2016 found Black patients had about 43 percent lower odds of undergoing epilepsy surgery than White patients (odds ratio 0.57), and expanding insurance under the Affordable Care Act did not close it. The same pattern shows up in implanted neurostimulation devices: in one study, patients who identified solely as Black or African American were far less likely to have a device (odds ratio 0.21).

Medication access differs too. Among people with epilepsy on Medicaid, Black patients had lower odds of being prescribed newer-generation anti-seizure medications (adjusted odds ratio 0.71) than White patients. These are not biological differences. They reflect who gets referred, who gets offered advanced options, and how bias and access shape each decision.

The CDC summarizes seizure first aid as Stay, Safe, Side. Stay with the person and time the seizure. Keep them safe: move hard or sharp objects out of the way and put something soft and flat under the head. Turn them gently onto one side to keep the airway clear, and loosen anything tight around the neck.

Do not hold the person down or try to stop their movements. Do not put anything in their mouth, including your fingers; a person cannot swallow their tongue, and objects break teeth and block breathing. Stay until they are fully alert, and speak calmly. Most seizures end on their own within a couple of minutes.

Diagnosis usually starts with a detailed account of the events, then an electroencephalogram (EEG) to record the brain's electrical activity and a brain MRI to look for a structural cause like an old stroke, scar, or tumor. A clear description from someone who witnessed the seizure is one of the most useful pieces of information a doctor can get.

Most people start on an anti-seizure medication, and the right one controls seizures for the majority. When two appropriate medications have failed to stop seizures, that is drug-resistant epilepsy, and it affects about one in three patients. At that point, more medication is usually not the answer. The next step is an epilepsy center, where specialists can evaluate you for surgery to remove or disconnect the seizure focus, or for neurostimulation devices that interrupt seizures. These options are underused everywhere, and most underused for Black patients. Drug-resistant epilepsy is exactly the situation a referral is meant for.

One more reason control matters: frequent seizures, especially convulsive and nighttime seizures, are the strongest changeable risk factors for sudden unexpected death in epilepsy (SUDEP). Reaching seizure freedom is not just about quality of life. It lowers a real mortality risk.

If you or someone you love has epilepsy, two questions move care forward. Ask your doctor: "Have I seen an epilepsy specialist?" and, if two medications have not worked, "Can you refer me to a comprehensive epilepsy center?" Bring a seizure log with dates, lengths, and what the seizures looked like. If a clinician dismisses your concerns or never raises specialist care, that is a reason to seek another opinion, not to wait. You can find a Black neurologist or a clinician experienced in caring for Black patients through our directory.