Asian Americans and Epilepsy

May is Asian Pacific American Heritage Month.  3 of every 200 Asian Americans have epilepsy, if not more.  Asian Americans are less likely to report that they have epilepsy than the population in general because of the stigma attached to it.   

In the Asian American community, there is probably more misunderstanding and perpetuation of myths.  Many still believe that epilepsy is caused by evil spirits and only trust so-called traditional cures:  herbal treatments or exorcism.

One particular case that stands out is that of Lia Lee, a Hmong child whose story was told in the 1997 book The Spirit Catches You and You Fall Down.  Her family did not have anyone to help bridge the language and cultural barrier when dealing with the Western medical system.  Their mistrust only grew when the medications did not stop the seizures.  As her seizures worsened, her parents took her off the medication and tried herbal treatments and had a shaman try to expel the spirits that were causing her seizures.  They only got worse and increased day by day. She eventually lived in a vegetative state until he finally passed.

The 2009 issue of the Epilepsy USA magazine has an article about Asian Americans and epilepsy.  It includes a reference to The Spirit Catches You and You Fall Down. Even though this article was written in 2009, it is just as relevant today as it was then.

(http://www.epilepsy.com/sites/core/files/atoms/files/EpilepsyUSA2009%20Issue2.pdf)

That is why the Epilepsy Foundation is making an extra effort to reach out to the Asian community with their initiatives, including putting together Fact Sheets in Korean and Vietnamese.  They already have one in Chinese.

You can read more about their agenda here:

http://www.epilepsy.com/article/2015/5/epilepsy-foundation-celebrates-asian-pacific-american-heritage-month

http://www.epilepsy.com/learn/diverse-communities/epilepsy-and-asian-american-communities

I believe that some parts of the Asian community will still cling tight to traditional cultural values of using herbal and spiritual treatments for epilepsy.  Unless these practices are known to be harmful, we should not actively push back on them, denying Asian Americans their way of life.  Doctors should be respectful of what their patients have to say and really listen to what is going on.  It should not be a one-way street in which the doctor does his medical tests, figures out what medications to give, and pushes you out the door. It’s bad enough if they do that with people without cultural differences, but it is ten times worse for cultural and language barriers.  Instead, there should be room for negotiation.  They should be able to work out a plan that includes both western and eastern medicine.

With all the efforts that are going on, I expect that in the future, there will be much more epilepsy awareness in the Asian American community.  We just have to continue to talk about it.

Please share your thoughts.  Thanks!

http://www.asianweek.com/2013/07/30/epilepsy-and-asian-americans-bringing-community-together-through-knowledge-and-understanding/