Many years ago, my uncle was diagnosed with epilepsy. As the story goes, when he was a baby, he was dropped on his head. Then, the seizures started. My uncle’s epilepsy shaped his life and the choices he made. In my culture, like in many others, epilepsy is a condition not to be talked about. Even today, epilepsy is often associated with shame, superstition, stigma, secrecy and negative perceptions. But we should all know better.
Epilepsy knows no boundaries—whether they be race, gender, age or geography. People with epilepsy span all walks of life, including children and adults, college students, athletes, professionals, parents and grandparents.
While epilepsy is one of the world’s oldest known medical conditions and an estimated 1.5 percent of Asian Americans live with this chronic condition, in our community there is still a lack of information that leads to confusion, misunderstanding, fear and a reluctance to talk about epilepsy. And for those who do not speak English or don’t speak it very well, patients and caregivers alike, getting information about epilepsy and separating the facts from the myths is hard.
Growing up, the condition wasn’t discussed in my family, and my uncle was fortunate that his seizures could be well controlled with access to care. There was far too little accessible information, however, not only about the condition itself, but also about the experience of Asians and Asian Americans living with epilepsy, an area that is still vastly understudied today.
Even though many people with epilepsy are able to live full and healthy lives, this fact is not widely known among many in the Asian and Asian American community. People with epilepsy marry—though my uncle chose not to do so due to his epilepsy diagnosis—they have children, they work, and they live active lives. And with expert medical care, many people with epilepsy can control their seizures or remain seizure free for years.
The best way to stop the mischaracterizations and stigma associated with epilepsy is to talk about it. Talking openly and publicly about epilepsy can help improve the lives of those living with the condition and their families, creating a space to learn more about the condition, ask questions, get medical advice and lessen misperceptions about epilepsy. In the many years I’ve worked with people with epilepsy, I have seen people’s attitudes change and lives improve when I opened the door to start a safe conversation about it.
Through talking about epilepsy, some information has emerged about how many Asian American communities are affected by epilepsy and what kinds of tailored treatment, outreach and educational services they may need. But, there’s much more to learn.
That’s why I am so proud that the Epilepsy Foundation is launching a campaign to raise awareness about epilepsy in Asian American communities. The Foundation and its affiliate organizations in Hawaii, Ohio, Oregon, Texas and Washington are disseminating information about epilepsy and are asking people to share their story online.
Given the treatment options that are now available and better understanding among medical professionals, I often wonder if my uncle would have made different choices had he had more information and better support. This is why I am so passionate about helping families and communities touched by epilepsy. My hope is that one day, by talking about epilepsy, sharing our stories and working together to find new ways to help patients and their families, we can build a network that is informed, inclusive and positive for all.
For more information about epilepsy in Asian American communities, visit the Epilepsy Foundation’s page here.
May Liang was executive director of the Epilepsy Therapy Project from 2003-2005. Through a recent merger with the Epilepsy Foundation, a unified organization focusing on education, awareness, support, research and new therapies for people and families living with epilepsy was developed. Liang currently serves on the Epilepsy Foundation’s Board of Directors.