May Liang
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 uncles 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 boundarieswhether 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 worlds 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 dont 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 wasnt 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 isstillvastly 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 marrythough my uncle chose not to do so due to his epilepsy diagnosisthey 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 Ive worked with people with epilepsy, I have seen peoples attitudes change and lives improve when I opened the door to start a safe conversation about it.
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Epilepsy and Asian Americans: Bringing Community Together Through Knowledge and Understanding