Asian Americans and Pacific Islander Americans

 

For many Asian Americans and Pacific Islander Americans, 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 Islander Americans 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 the Asian American and Pacific Islander American community can be different than in other communities:

  • Pacific Islander Americans 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 Islander Americans were less likely to see a neurologist after first diagnosis.  
  • 10% of other races, including Asian Americans and Pacific Islander Americans, 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 Islander Americans 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 languages, can make it hard for many Asian Americans and Pacific Islander Americans 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. 

"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 American 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. 
 

We are excited to work with the Association of Asian Pacific Community Health Organizations (AAPCHO) and Korean American Special Education Center (KASEC) to develop translated fact sheets about epilepsy and seizures and a poster about seizure first aid.

Seizure first aid posters are available in Simplified Chinese, Korean, Tagalog, Vietnamese, and many other languages. 

  • 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.
  • Epilepsy Foundation Hawaii: 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. 

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

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Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

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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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Tools & Resources

Get information, tips, and more to help you manage your epilepsy.

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