Epilepsy is one of the most common neurological conditions. One in 26 people will develop epilepsy at some point in their life. More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined. Even though epilepsy is common, silence, fear and myths about epilepsy persist in every community, including Asian American communities.
While the research available on Asian American communities and epilepsy is limited, data suggests that 255,000 Asian Americans in the United States — or 3 in 200 — have epilepsy. Because of challenges collecting data, as well as fear and confusion about having and disclosing the condition, the number could be even higher.
Epilepsy can be confusing and there is a lot of misunderstanding about what causes epilepsy and how epilepsy can impact a person's day-to-day life.
What We Know
- Epilepsy is a medical condition. Epilepsy is NOT anyone’s fault.
- Epilepsy can affect anyone, no matter their age, race or geography. That’s why it’s important for everyone to learn about epilepsy.
- Epilepsy affects everyone differently.
- You are not alone. 2.9 million Americans have epilepsy. One in 26 people will develop epilepsy at some point in their life.
Lack of understanding about epilepsy, along with challenges finding affordable, quality care available in Asian languages, can make it hard for many Asian Americans living with epilepsy and their families to live full and healthy lives. In addition, some people have negative perceptions about epilepsy, such as the mistaken belief that epilepsy has a spiritual cause or is a mental illness. Talking about epilepsy is often seen as taboo, not something shared outside of the family.
This is why we are joining Asian American communities to raise awareness about epilepsy. We are asking everyone to learn about epilepsy, talk about it and share their stories. By starting the conversation about epilepsy, we can help improve the lives of Asian Americans living with epilepsy for the better.
Learn. Talk. Share. It's time to talk about epilepsy in Asian American communities. By learning and talking about epilepsy, we can help reduce fear and misunderstanding and improve the lives of those living with epilepsy for the better.
Want to help? Ask a question. Share your story. And simply talk about it. You can make a difference. With knowledge comes understanding.
- “The best way to stop the mischaracterizations and stigma associated with epilepsy is to talk about it,” May Liang, Epilepsy Foundation Board Member
- “Epilepsy has certainly brought change to my life, but it does not define who I am," Wendy, a Chinese American financial planner with epilepsy.
- “Sometimes people think epilepsy is a mental problem. But it’s not. Asian American communities don’t always know about seizures. That’s why I talk about it. I want to help other people,” Canna, a Chinese American mom with epilepsy
- “I’m not an anomaly. I’m one of many,” Kara (name changed to protect privacy)
Facts about Epilepsy
- What is Epilepsy?
- Who Gets Epilepsy?
- What is a Seizure?
- Seizure First Aid
- Facts about Seizures and Epilepsy
- Epilepsy in the Asian American Community
Translated Fact Sheets
We are excited to work with the Association of Asian Pacific Community Health Organizations (AAPCHO) to develop translated fact sheets about epilepsy and seizures.
Life with Epilepsy
- Find Your Local Epilepsy Foundation
- Information for parents
- Information for women
- Information for youth
- Information for seniors
- Frequently Asked Questions about Epilepsy
- "Body and Spirit: Asian Americans and Pacific Islanders with Epilepsy," p. 5-11 in
Share your story in the comments below.
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