Asian Americans and Pacific Islanders


A man and his child looking at a laptop

For many Asian Americans and Pacific Islanders, stigma about epilepsy and lack of information about the correct anti-seizure treatment may be barriers to appropriate care for their epilepsy and seizures.

With more resources and information, together we can help make a difference for Asian Americans and Pacific Islanders living with epilepsy. 

While the research available on Asian American communities and epilepsy is limited, according to Epilepsy and Behavior, 140,000 Asian American adults in the United States have epilepsy. This means about 0.6% of Asian Americans have epilepsy. Due to the challenges of collecting data, as well as fear and confusion about having and disclosing an epilepsy diagnosis, the number of Asian Americans with epilepsy could be much higher. 

According to the National Institute of Health, the treatment of seizures and epilepsy in Asian American communities can be different than in other communities:

  • Pacific Islanders and Native Hawaiians may take longer to receive positive results from their treatment with anti-seizure medications. This means they could still be experiencing seizures for a longer time than other people and have a harder time finding the right medication for them.  
  • 37% of people with epilepsy see a neurologist within 1 year of their diagnosis. However, Native Hawaiians and Pacific Islanders were less likely to see a neurologist after first diagnosis.  
  • 10% of other races, including Asian Americans and Pacific Islanders, receive surgery as children, compared to 60% of Whites, 7% of Blacks and 15% of Hispanics.  
  • Among adults, only 8% of other races, including Asian Americans and Pacific Islanders receive surgery compared to 69% of Whites, 7% of Blacks, and 9% of Hispanics. 

According to the National Institute of Health, certain anti-seizure medications may not be recommended for Asian Americans. People with Asian ancestry should check with their doctor about the following medications before starting an anti-seizure medication regimen:

  • Carbamazepine (Tegretol, Carbatrol) may cause a life-threatening allergic reaction called Stevens-Johnson syndrome (SJS) in people of Asian descent. This allergic reaction may cause severe damage to the skin and internal organs. People of Asian ancestry with a genetic (inherited) risk factor may be affected.  
  • About 15% of people from China, Taiwan, Philippines, Malaysia, or Indonesia have this gene, versus 3% in people from India and 1% in people from Japan or Korea.  
  • Doctors who are treating people with epilepsy will usually order a test to see if the genetic risk factor is present in their Asian patients before prescribing carbamazepine.

Lack of understanding about epilepsy, along with challenges finding affordable, quality care available in Asian and Pacific Island languages, can make it hard for many Asian Americans and Pacific Islanders with epilepsy 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. Additionally, some providers have inadequate knowledge and lack of training in cultural humility, making it harder to have honest and productive conversations between patients and their healthcare teams.

"The best way to stop the mischaracterizations and stigma associated with epilepsy is to talk about it. May Liang"

Learn. Talk. Share. It's time to talk about epilepsy in Asian American and Pacific Islander communities. By learning and talking about epilepsy, we can help reduce fear and misunderstanding and improve the lives of people with epilepsy for the better.

To start, you can share your experience with epilepsy by sharing your story on our eJourney blog. This blog is a safe space for people with epilepsy to talk about their journey. You can also read through the many other stories shared via the eJourney blog to know that you are not alone. 

Seizure first aid posters are available in Chuukese, Simplified Chinese, ‘Ōlelo Hawai‘i, Ilocano, Korean, Marshallese, Samoan, Tagalog, Vietnamese, and many other languages. 

The Epilepsy Foundation has partnered with the Association of Asian Pacific Community Health Organizations (AAPCHO) and Korean American Special Education Center (KASEC) to support community members living with epilepsy. 

We've also worked with these organizations to develop translated fact sheets about epilepsy and seizures and a poster about seizure first aid. We look forward to continued collaboration with these organizations to provide education about seizures and epilepsy to everyone. 

For more resources, the Epilepsy & Seizures 24/7 Helpline has trained information specialists standing by to answer your questions about epilepsy and seizures and provide you with help, hope, support, guidance, and access to resources from your local Epilepsy Foundation. In addition to our 24/7 Helpline, if you live in Hawaii and need help related to seizures and epilepsy, we encourage you to reach out to the Epilepsy Foundation Hawaii for assistance. 


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Epilepsy Medication

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Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.


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