CF in Japanese...

A

anonymous

New member
I was watching an "educational" program the other day with my wife, Yuka, and the subject was actually related to "bio-terrorism", but they made an introduction using Cystic Fibrosis (Of All Things!).
There actually is a word in Japanese for it, "Nou-hou-sei-sen-i-sho" (this forum doesn't support Japanese, so I can't even show the kana or kanji for it).
They started the segment with a five year old girl from England getting PD from her mom. I couldn't catch the translation to the whole thing, but basically, they were comparing the lung infections in CF to having bugs get into the lungs in large enough quantities to kill or seriously injure anyone "downwind" from where they started the attack. (So, they never really got into the whole CF thing)
After the CF intro, Yuka said CF was curable. I assured her it is not, because it is a genetic disease, as the program had stated it was. She said the program indicated the disease is curable, and I replied with "I'd like to know how it is 'curable", because I only know it is 'treatable". She said she didn't know how, and the program just said it was curable, but didn't say how, either. So, that was one thing that irritated me--a program that couldn't get it's facts right!
Yuka later on searched the internet with me for the word in Japanese...we found a few home pages in Japan, and one indicated that about 100 Japanese have been diagnosed with CF, ONE HUNDRED!!
I saw another home page, which only listed antibiotics, but no enzymes!
Another home page stated that the U.S. was the origin of CF (False information from what I heard), whilst another home page indicated that CF was discovered in Germany (which seems to agree with the Wikipedia).
One surprise to me, one home page stated that the F508 gene is over 5,000 years old!!! (I guess that means I have F508, but what mutation from there is still unknown to me!!)
So, now I know why there is NO CF Centers here, or even doctors that are well educated in CF. But, Yuka did find on one home page, some supplements that were highly recommended, and I've been doing them the past several months, anyway.
At least the best thing that came out of seeing the tv program is that Yuka is a little more well educated about CF, and maybe will let me eat my pretzels and take all the salt I need now!! (Even though the hot summer is finally winding down)
She actually was giving me a little PD last night, after I had a heavy cough.
 
6

65rosessamurai

Guest
OOPS! That was me...Thought for sure I logged in once!! Oh well...seems kinda obvious when it says 'Japan', right??
 
C

Chaggie

New member
Do you remember the name of the show and the air date?  My
wife, who is Japanese, is always renting Japanese TV shows, I know
she'd be interested in seeing it if the get the show at the her
video store.<br>
 
6

65rosessamurai

Guest
Hi Chaggie (Chris),
I do have the name of the program, "Sekai Maru Mie!" is the name, and it was on Yomiuri Television, channel 10 in Osaka. (Again, if this forum supported kana or kanji, it would be easier to comprehend) Where is your wife from in Japan? Kanto, Kansai, Okinawa, Hokuriku or Hokkaido?
I doubt it will be available on video, unless she happens to have a relative making recordings to send to her. If you happen to have cable tv with enough channels to get some Japanese programs, that would be great!! If so, let me know, so my wife won't feel so 'homesick', when the day comes that we (I) return State-side.
BTW, are you a Hockey Fan, or Hockey Player???

Best,
Fred
 
C

Chaggie

New member
Thanks Samurai.  She's actually from New York, but her parents
used to bring her back to Japan during the summers, most of her
time was spent in Nagoya.  Depending on the are you come back
to,   LA, Boston, New York, you can find all kinds of
Japanese grocery stores that usually have video sections as
well.<br>
<br>
I'm Both, I've been playing for almost 30 years now.
 
L

Liza

New member
Hi, We had always been told that CF was basically non-existant in Asia. Being active duty military when our girls were diagnosed (just retired last year), Japan was one place where we were not allowed to go because they had no CF centers there and the girls would not be able to get proper treatment.

We were also told that CF was European. Which doesn't seem completely right since some of the mutations have Jewish roots. Well unless you start looking way way back to migration, then I guess it would make since.



Liza
(mom of 2teen girls w/CF)
 
6

65rosessamurai

Guest
Liza,
If you look in the CF Wikipedia, it will indicate the Ashkenazi Jews as being affected by the CF gene. According to the Wikipedia, they were also of European descent, living in the area of Germany, Poland, etc.

As for no existence of CF care in Japan, it was unfortunate that the internet boom didn't start until AFTER I came here, or I'd probably find out what kind of coverage they would have available for me. I actually feel my ex-wife had deceived me into believing my health would be properly taken care of...but because she actually cared less about my health, I divorced her and I ended up having to do it all myself (researching CF, doctors, etc.).
 
L

Liza

New member
Yea, the internet has really been helpful. When we first found out that we could have the opportunity to go to Germany the first thing we did was look on-line for CF centers. That was back in 97. Then we discussed it with out girls doctor asking for her opinion and if she would give us a letter stating that she had no problem with the girls leaving the country for three possibly four years. She wrote us a great letter stating their health and the countries that she had no problems us moving to and included the ones that she did not recommend for various reasons.

Later when we found out what mutations our girls had I tried to do some research on-line to see what I could find. I know the doctors say it doesn't matter where it came from, and it doesn't, but I was still curious (moms side or dads side you know) there is no history of CF in either family and also because I am "full blooded" hispanic and at the time the chances of hispanics having CF or being carriers was so slim. Or so we were told. My husband on the other hand is English and French. So there was the curiosity. I have no full blooded siblings but a very large extended family (aunts,uncles etc). My girls are the only ones w/CF. No one has yet decided to get tested to see if they are carriers, so we don't even know which side of my family are the carriers.

Off subject sorry. I tend to go off on a tangent sometimes.

Liza
(mom of 2teen girls w/CF)
 
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