Cystic fibrosis diagnosis Tokyo

Hello everyone!

Does anyone know of a hospital where they can test you for cystic fibrosis?

For context: I gave birth almost two months ago and since then, whenever I put my hands in water for too long I get something called Aquadermic wrinkling of the palm, which is something commonly found in people with active CF or carriers of the gene (I thought at first that it was a baby soap allergy as I’d never had this before).

In Europe or the US your baby gets tested at birth as there’s a 1/3000 chance Caucasian people carry the gene. However, in Japan there are currently less than a 100 people with CF and it’s so rare they don’t test babies at the screening test.

My problem is with a disease that’s so rare here, where do I go and take my newborn to get tested? Myself too, obviously, but I’m pretty sure I would have had other and more serious health problems before if I had active CF.

I’ve looked on the internet and called the hospital where my baby was born to no avail, so I know it’s a pretty long shot but maybe some of you wanting to have babies have been tested here and have some info?

Thanks!

2 comments
  1. My husband is a doctor in Japan. For something that rare, you would absolutely need to go to a bigger University hospital. Are you in the Tokyo area?

    You could possibly be a carrier for CF, but you would absolutely know if you have active CF. It’s present from birth and progressive and devastating.

    Does your baby have failure to thrive or poor breathing? Any phlegm? Are their bowel movements normal?

    If your baby is doing fine in all those areas it would be extremely unlikely that they have CF.

    Is your partner also Caucasian? In order to have CF both parents must be carriers of the gene. If your partner is Japanese the likelihood your child has CF is astronomically low.

    Here’s a case study in Japan.

    [https://www.frontiersin.org/articles/10.3389/fped.2021.800095/full](https://www.frontiersin.org/articles/10.3389/fped.2021.800095/full)

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