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.
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:
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!
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