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Foundation raising awareness of epilepsy

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When Joshua Nalls was 5 years old, his parents noticed he stared off into space and was unresponsive when they called his name. Recognizing these as the same symptoms Nalls’ older brother displayed, his parents had him evaluated by a doctor.

After two years, multiple CAT Scans, MRIs and a grand mal seizure, Nalls was officially diagnosed with epilepsy. Now 34, Nalls is one of nearly 3.4 million Americans with epilepsy, a neurological disorder where nerve cell activity in the brain is disturbed, causing seizures. Epilepsy can develop at any age and is typically diagnosed a year after symptoms appear.

Roughly 637,000 African Americans live with epilepsy, according to the Centers for Disease Control and Prevention (CDC). Despite being more likely than whites to be diagnosed with the disorder, African Americans are often underrepresented in epilepsy awareness campaigns and have less access to care.

Crystal Hagans, executive director of the Epilepsy Foundation Great Lakes region (representing Ohio and Indiana), said this lack of access can lead to prolonged issues, including extended hospital stays and recurrent seizures. Hagans said African Americans are 10 times more likely than whites to experience these issues.

The Epilepsy Foundation helps those living with epilepsy to find neurologists, assistance with medication and other resources. Currently, the Great Lakes chapter is working on creating a support group for individuals with epilepsy in Indianapolis, similar to a group in Elkhart. The foundation also helps people find resources to balance their diets and reduce stress levels, which can lessen the rate and severity of seizures. Knowing where to find resources, Hagans said, drastically improves health outcomes for those living with epilepsy.

Nalls, who lives in Ohio, has had just two neurologists: one when he was a child and one as an adult. This consistency allowed him to build a relationship with his doctor, which he said benefits both parties. Patients feel they have more control over their health, and doctors have a better understanding of the patient’s needs.

Currently, Nalls is two years seizure free. He credits extended-release medication, which allows people to skip an afternoon dose of medication, as well as improvements in technology for a decrease in his seizures. Despite increasing efficiency in medication and technology, Nalls said not enough people understand epilepsy. Both he and Hagans attribute this to the stigma surrounding the condition.

“It’s old-school thinking,” Hagans said. “Before there was a lot of understanding and information, a seizure may have looked like a kind of possession or illicit drug use. Because of that, people really didn’t want to talk about it, and to this day, people still don’t talk about it.”

For those who have epilepsy, a lack of understanding surrounding the condition makes it difficult to feel supported.

“I’ve lost jobs because I had a seizure onsite,” Nalls said. “There’s a stigma that it’s not worth the risk of having someone with epilepsy around. As a young child, it was difficult building friendships because if you have a seizure and they don’t understand what happened, they don’t want to be friends with you anymore. It’s difficult to deal with emotionally because you experience trauma that comes along with the stigma.”

Recognizing early warning signs of epilepsy and seeking treatment can drastically improve outcomes, particularly for African Americans. More than any other demographic, Black Americans are more likely to be diagnosed with epilepsy in the emergency room following a seizure.

Further, Sudden Unexpected Death in Epilepsy (SUDEP) is more common in African Americans compared to white and Latino populations, according to the National Center for Biotechnology Information. People with poorly controlled epilepsy are at the greatest risk of dying from SUDEP, which is why diagnosis and consistent treatment are important.

Hagans said parents should look out for their child staring off into space, repetitive or autonomous movements

“I want as many people as possible to become aware of what [epilepsy] is,” Nalls said. “I want people to be aware of what to do if you see someone having a seizure, and I want people with epilepsy to know what they need to do to take care of themselves.”

Contact staff writer Breanna Cooper at 317-762-7848. Follow her on Twitter @BreannaNCooper.

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