Saturday, June 8, 2013

How Do You Say "Fragile X" in Japanese?

Or any foreign language, for that matter?

I am 100% Japanese by heritage.  My parents immigrated to the US in the '70s and then I came along almost immediately thereafter.  They tried very hard to speak only Japanese to me as I grew up so I actually knew no English on my first day of school.  In fact, my cousins in Japan who learned English in school knew more English than I did, the kid who lived in America and was born there.

Last fall, we moved my mother in with us after she had retired and her house started falling apart.  That turned out to be a boon for the family because not only did I feel better know that my technically-senior-citizen mother wasn't living alone 45 minutes away, but she now gets unfettered access to her grandson and occasionally, we get a de facto babysitter.

It also means that I got to rebuild my Japanese vocabulary, which had gotten rusty over the years.  But that also means that medical terms that affect the kids -- her grandchildren -- have to be either translated or at the very least explained in a different language.

Now, my mother isn't completely helpless with the English language.  Before she retired, she worked for well over 25 years for an international commodity brokerage firm, so her English -- while heavily accented and somewhat broken -- is perfectly serviceable.  But medical or scientific concepts were certainly not part of her usual lexicon, and while she understands medical terminology if they're presented in Japanese, the disconnect occurs when medical terms are stated in English without knowing what the Japanese equivalent is.

She understands what "autism" is, even when said in English.  But rarer or less popular conditions like Fragile X is a bit more of a mindnumber.

Since she's a part of the family, since these are her grandkids that we're talking about, since she lives in our home, my mom has been paying close attention to what we'd need to expect with the kids and also digging for more information.  I love my mother -- she takes charge just enough to contribute to the child-rearing without interfering, acknowledging that despite her own years of experiencing raising me and my sister, Lori and I are still Henry's parents and the parents of our new baby to come.  I suspect that this level of deference isn't common, especially among multi-generational households.

Nonetheless, when we went for the tests, we had to tell my mom something, so I tried my best to explain what was going on, despite not knowing the exact terms.  And as we were talking tonight in the living room, we talked about what Fragile X is, and the fact that statistically, there's no way that Fragile X is a new thing (newly discovered, perhaps, but there's no way that it hasn't been around for decades before its discovery).

So I started searching for Fragile X in Japanese, and while I couldn't find any direct translation, I did stumble across some abstracts of scholarly articles written about studies on Fragile X conducted by Japanese universities.....from the late '80s.

That makes me wonder, therefore, a few things.  First, was 1991 really the first year of discovery of FMR1?  And second, if Japanese researchers knew about FX, what does that mean for the usual homogeneous society of Japan, where congenital disabilities of any kind tend to be culturally shunned, and the kids who do have Fragile X, Down Syndrome, or other hereditary conditions?

Since I'm unable -- yet -- to find a neat and tidy term that translates Fragile X from English to Japanese, that got me to wondering how medical conditions are translated into other languages.

On Wednesday, when we were at the hospital for Henry's surgical procedure, there was a Latino family, who was apparently getting some either bad or potentially bad news from the surgeon, who was explaining everything in Spanish.  I understand just enough Spanish to get by, but not at conversational speeds, and certainly not in a situation where I'd have to rudely eavesdrop.  Nonetheless, we surmised that it was unhappy news, because after the doctor left the waiting room, the mother started sobbing.  Lori even went over to give her the box of tissues.  It was heartbreaking because regardless of language or culture, no parent wants to get bad news from the surgeon regarding their baby's procedure.

Medical conditions are universal, but speaking between languages about uncommon concepts is tough.  So now, with my mother wanting to know what's going with her grandkids so that she can help out in appropriate ways, we have to figure out how to translate the needs of the kids from English to Japanese and vice versa.

Thus, I wonder how medical concepts do get translated from one language to another.  Are there Fragile X support groups and societies in Japan?  French Canada?  Belgium?  Italy?  And what is it called there?

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