An editorial on being a mother of a child with Tay-Sachs

[conuly]

She mentions that it wasn't a huge concern pre-pregnancy because, of course, they're not Jewish.

While it's true that Ashkenazi Jews have a significantly higher rate of Tay-Sachs than the general population (along with Cajuns, who have a similar rate), it's also true that Irish-Americans have an elevated rate of Tay-Sachs.

Among the general population, about 1 in 300 people is a carrier. Among Ashkenazi Jews and Cajuns and French Canadians, the number is about 1 in 30. And among Irish-Americans, the number is 1 in 50.

As it happens, the writer had taken a pre-natal test for Tay-Sachs anyway. But she was told it was unnecessary because, after all - not Jewish!

I'm going out on a limb here, but I'm guessing that with a child named Ronan, she and/or the dad may be Irish-Americans. And guess what? They get it too.

I'm not going to tell people what choices to make. All I can say is that just because you're not Jewish, it doesn't mean that Tay-Sachs can't possibly affect you. (Heck, even if you aren't in one of the OTHER groups that has a higher incidence of Tay-Sachs, you may still be a carrier.)

Comments

[leora.livejournal.com]

Tay-Sachs is a horrible disease. One of the things I was quite pleased to learn from getting my genes analyzed is that I do not carry it. I also am 99% Ashkenazi Jew and 1% they're not sure as far as what they analyzed, so I knew I was in a higher risk group. Of course, it all only matters if I ever have a child from my genes, but still, I'm glad not to carry it. It's such a horrible disease. I'm sorry for people whose children do have it and for the children as well.

[conuly]

Oh god, it really is.

Though apparently there is an extremely rare variant of it that only hits later in adolescence and doesn't kill you. But really, that doesn't sound like a picnic either.

[leora.livejournal.com]

I didn't know that. That is interesting. I guess that's better than the usual version. But given how bad the usual version is, that isn't saying much.