By Kenny Chung
Fifteen years ago, my uncle passed away. Many words come to mind when I think about him. He was loving, generous and had an amazing sense of humor. Most of all, he was my caregiver and my friend.
And something many people did not know, he had epilepsy.
Like more than 2 million Americans, my uncle lived with a medical condition that, while common worldwide, is shrouded in fear, shame and as a result stigma. For Asian American communities, my Chinese American family included, battling this shame and confusion about epilepsy has been hard.
My uncle experienced the all-too-often confusing glares and looks associated with having a convulsive seizure—the outward manifestation of the type of epilepsy he had. At the time, his treatment options were limited. To prevent seizures and spare himself from the shame he felt from having epilepsy, he took a medication that, while it helped him live seizure-free, had serious side effects. He died at age 38 from complications of epilepsy.
Epilepsy affects everyone differently and no one’s story is the same. While some are able to live full lives and can effectively control their seizures with the right medical treatment and advice, others like my uncle struggle. Unfortunately, one thread that crosses many stories, and particularly Asian American communities, is the negative perception that is so closely held about epilepsy.
This shared struggle, and one that my uncle lived with each day, is what led me to conduct the first and only national survey of Chinese and Vietnamese American adults about their perceptions of epilepsy. While there is considerable research on epilepsy, little of it is specific to Asian Americans and less so on the needs and responses of these diverse communities.
As part of the study, my team at UC Berkeley surveyed over 2,800 Asian Americans, including hundreds of college students. The results confirmed what we expected: lack of knowledge about epilepsy is pervasive and there are a number of myths and negative perceptions that people have about it.
While most had heard or read of epilepsy and had seen a seizure, only a third knew someone with epilepsy personally. Over 40 percent said they would object to their children marrying a person with epilepsy and nearly the same number would not knowingly hire someone with epilepsy.
As challenging as these misconceptions were, they provided a clear opportunity for education, and with it – a glimmer of hope. The Asian Americans we worked with were thirsty for information on epilepsy—wanting to know causes and how to recognize and provide first aid for a loved one during a seizure. Not surprisingly, when provided with critical information, people’s views about epilepsy quickly changed for the better. Young Chinese and Vietnamese students wanted to serve as information carriers and were eager to share information with their family and friends.
The lesson: knowledge really is power. Public health professionals, medical providers and communities of all ages and backgrounds can help to end fear and misconceptions about epilepsy.
Conversations can bring about profound changes in attitudes. Getting information is the first step and the Epilepsy Foundation is a great starting point. It is committed to separating the facts from the myths and ensuring that all communities—including Asian Americans—are supported. Find help, hope and support at www.epilepsy.com.
One thing that we can all do is to put an end to the needless fear and confusion about epilepsy and become better informed advocates for our families, friends and communities.
While I may not have been able to guide my uncle to the best medical treatment to manage his condition, I have honored him years later through my research and commitment to improving public health every day. He’s the force behind my work and why I’m talking about epilepsy.
Kenny Chung, a committed public health advocate, is a researcher at Health Research for Action and a graduate of the Harvard School of Public Health. He was one of the principal researchers in one of the only studies conducted with Asian Americans about epilepsy, “Knowledge, Attitudes, and Practice towards Epilepsy (KAPE) Survey of Chinese and Vietnamese College Students in the U.S.“