By Kiara Doyal, The Seattle Medium
According to the U.S. Census Bureau and the Centers for Disease Control and Prevention (CDC), 578,000 Black people have epilepsy or a seizure disorder. Black individuals are disproportionately affected by epilepsy, with higher rates of diagnosis, emergency room visits, and status epilepticus (prolonged or continuous seizures) compared to White Americans, highlighting the need for increased awareness and improved healthcare access.
Seven years ago, a seemingly ordinary evening for 28-year-old Payton Doyal took a sudden and life-changing turn. After having some ice cream and playing video games, Doyal went to bed without any indication that something was wrong. Later that night, a loud crash echoed from his room. His stepfather, who often stayed up late, decided to check on him and made a terrifying discovery — Doyal was lying on the ground, blue in the face, and seizing.
“My stepfather stays up pretty late, and thankfully, one night, he decided to come check on me because he heard a loud noise and found me lying upstairs on the ground, blue in the face, seizing,” Doyal recalled. “This first happened in my early twenties, and although the doctors did not know what triggered the seizure after the accident, they diagnosed me with epilepsy.”
Diagnosing epilepsy can be complex and challenging. Andrew Ko, a neurosurgeon with the Regional Epilepsy Center at Harborview Medical Center, says that more often than not, there is no identifiable cause for seizures — even among people diagnosed with the condition.
“It is not always clear what constitutes a seizure. Most events do not entail characteristics that often come to mind as a stereotypical seizure. While some seizures, called generalized tonic-clonic seizures, do have obvious and very dramatic characteristics, many seizures are far more subtle,” said Ko. “Seizures are not visible on a CT or MRI of the head. An EEG, or electroencephalogram, is a useful tool to look for abnormal brain activity, but in the majority of cases, even in people with epilepsy, this test will be normal unless the person actually has a seizure during the exam.”
“There are many different causes, but most of the time we do not ever get an answer of why seizures start, or more importantly, why they do not go away when treated,” added Ko. “There are factors associated with developing epilepsy, but correlation is not causation. For example, people with uncontrolled epilepsy often have a history of emotional or physical abuse, but the vast majority of people with that history do not develop epilepsy.”
Epilepsy treatment focuses on controlling seizures through medications, surgery, devices, or dietary changes. However, for Doyal, like many other people, medication is the primary approach.
“I was prescribed to take a medication called Keppra, and that has been very effective,” said Doyal. “I experience convulsive seizures, but thankfully, they haven’t occurred since I have been prescribed the medication.”
There is a laundry list of potential triggers causing a seizure in people who have epilepsy, including lack of sleep, flashing lights, stress, alcohol, missing medication, and much more. Knowing this, Doyal, a law student in California, says the best way for him to manage his condition is to take his medication and be aware of things that could potentially trigger a seizure.
“I start every day by taking my prescribed medication because I know missing days could cause me to have a seizure,” says Doyal. “I try to avoid light and even the bright sun, which is hard living in California. Flashing lights specifically cause a weird feeling in my head, so I do not attend any event where lights would be flashing.”
“I have had to monitor many things, one of which is alcohol intake because that can trigger seizures. Epilepsy has also impacted my daily life because the medication regulates my emotions to the point where I do not experience highs or lows across any emotion,” says Doyal. “A big factor in my decision to pursue law was my condition, given that my emotions are regulated. Since attorneys are recommended to detach their emotions from their cases, epilepsy has honestly benefited me, and I have learned to adapt to my new normal.”
While Doyal has been fortunate in accessing care, that is not the case for many Black Americans with epilepsy. Ko said systemic inequalities in healthcare often create barriers to diagnosis and treatment for Black patients.
“I think the same systemic inequalities that affect Black individuals in everyday life, that impact access to health care, affect access to appropriate care for epilepsy. These are often compounded by chronic illnesses such as epilepsy. Two difficult problems make it even harder to obtain quality healthcare,” said Ko. “Access to appropriate care for epilepsy patients in general can be difficult.”
Ko emphasized the need for better education about epilepsy, explaining that the stigma and misconceptions surrounding the condition often prevent people from seeking treatment. Even when effective options are available, many people remain hesitant to pursue them.
“A survey in people with uncontrolled epilepsy asked patients, ‘If your surgeon could guarantee that brain surgery would cure your epilepsy without complications, would you do the surgery?’ and about 50% of people said ‘No,’” said Ko. “This sort of result, to me, shows that we have a long way to go raising awareness about epilepsy, ways of treating it, and consequences of not treating it; there are many shortcomings in whether we are able to accurately diagnose and treat epilepsy, and much research is needed to do it better.”
Doyal said that having a strong support system has made a world of difference in his life. Open communication with family and friends about his condition has provided reassurance and comfort.
“In any situation where I think a seizure might happen, for whatever the reason may be, I tell those around me to not take it lightly in the case that I do have a seizure,” Doyal said. “Educating the ones I am surrounded by on what to do in case I do have a seizure brings me peace of mind.”
“My support system has been amazing, and it gives me a sense of relief and comfortability in my day-to-day life knowing that I will be taken care of when I am under,” he continued.
There are many misconceptions about epilepsy, including the belief that it is a mental illness or that all seizures are convulsive. In reality, with proper medical care and management, people with epilepsy can often control their seizures and lead full, productive lives.
“People believe that being diagnosed with epilepsy is the end of the world, but with the right medication and support you will be just fine. It is not the end of the world,” Doyal said. “However, I do have thoughts if I will ever have a seizure again, but my support system has encouraged me to maintain positivity and [stay] motivated through it all.”
“Epilepsy has made me the most emotionally intelligent person because I don’t let emotions get to me, and I hope for those who do struggle with my same condition [that they] have had more of a positive experience managing epilepsy like I have had, rather than a negative experience,” he concluded.
Source: Seattle Medium
