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LANDOVER, Md.—An estimated 1.5 percent of Asian Americans live with epilepsy today and one in 26 people will develop epilepsy at some point in their lifetime. More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy–combined.
Despite the fact that millions of Americans, including many Asian Americans, have this chronic medical condition, and even more know someone who does, there is a continuing lack of understanding about epilepsy across all communities, leading to fear, discrimination and social isolation.
To raise awareness about epilepsy in Asian American communities and to reduce fear and misunderstanding, the Epilepsy Foundation is kicking off a national “26 Days of Epilepsy Awareness and Action” public information campaign. The campaign will include dedicated efforts by local Epilepsy Foundations in Hawaii, Ohio, Oregon, Texas and Washington.
“The Epilepsy Foundation is proud to work with the Centers for Disease Control and Prevention to help raise awareness about epilepsy in cultures throughout the United States. We have worked closely with African American, Hispanic — and now Asian American — communities to help ensure everyone knows what epilepsy is, what it is not, and how to help someone who is having a seizure. First aid for epilepsy is actually quite simple — but education about seizure recognition has been a challenge because of long-held cultural beliefs and attitudes,” said Philip M. Gattone, president and CEO of the Epilepsy Foundation. “To anyone living with epilepsy, know that you are not alone. The Epilepsy Foundation and its nationwide network of affiliates are here to help.”
In the Asian American community, there can be shame, superstition and reluctance to talk about epilepsy or for people with the condition to ask for assistance. Scientific studies, such as a 2011 University of California-Berkeley study, “Knowledge, Attitudes, and Practice towards Epilepsy (KAPE) Survey of Chinese and Vietnamese College Students in the U.S.,” demonstrate that misunderstandings about epilepsy and discrimination towards people with epilepsy persist.
With knowledge comes understanding, and the Epilepsy Foundation hopes the campaign will help create opportunities for people to talk about epilepsy, get information and alleviate fears that continue to persist about the condition among Asian Americans and in all communities.
“With the Asian American community making up such a large segment of the U.S. population, and given the prevalence of misinformation about epilepsy that exists, a concerted effort is needed to raise awareness and dispel the many myths that surround this condition,” said Princess Katana, director of multicultural affairs at the Epilepsy Foundation.
As part of the 26-day campaign, the Epilepsy Foundation is encouraging Asian Americans to talk about epilepsy to help change the lives of the millions of people living with the condition and their loved ones for the better. Individuals are encouraged to share their story about how epilepsy and seizures affect them, whether personally, as a caregiver, friend or family member, on the Epilepsy Foundation’s Facebook page. In addition, the Foundation will share daily facts about epilepsy and answer questions on Facebook and Twitter at #1in26 and will direct people to information and resources through a new webpage designed for the Asian American community available here.
