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Jul 21 2014

What Happens When You Are a Carrier for a Jewish Genetic Disease?

By at 10:13 am

Carriers-part-1

Lauren Weinstein and her husband were expecting their first child when they learned that they are both carriers of a gene that causes cystic fibrosis (CF), one of the 19 common genetic diseases found among Ashkenazi Jews. The prognosis for a child with CF is pretty grim, and Lauren underwent DNA testing to learn if their child would have the disease. Then she managed to write a touching and darkly funny comic called “Carriers” about the period of waiting for those test results, published in Nautilus. She agreed to talk with me about her experience.

1. What was the your initial response when you were told that there was a good chance your child would have CF? Were you scouring the internet?

I have never been a fan of researching any medical issue on the internet. Obviously, it is a writhing pit of misinformation, none of which may pertain to your specific problem, especially when it’s about something as serious as CF. I waited until I met the genetic counselor and the pediatrician. And the picture the pediatrician painted was pretty bleak, unfortunately. Read the rest of this entry →

Nov 8 2011

When Two Tay-Sachs Carriers Try to Conceive

By at 10:37 am
long and winding road

It's a long road to pregnancy for carriers of Tay-Sachs.

Jewish men and women are strongly urged to get tested for the gamut of Jewish Genetic Diseases before they attempt to have children. But what happens when your test results tell you the one thing you don’t want to hear: that both you and your partner are carriers for the same disease? A new article on Kveller chronicles the journey to pregnancy for one woman facing this unthinkable fate. She writes:

I’ve joined the ranks of women who spend too much time on fruitless internet searches, who walk the streets with “belly envy” for every pregnant woman who crosses my path. I’ve noticed that even knowing what I know, I still have yet to fully let go of a dream that this will all happen with the wave of a magic wand.

We strongly urge everyone to read her whole story on Kveller. Depressing, yes, but hopeful against all odds.

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