Yodeah.org

Spit! Spit! Spit!

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I remember way back when history was first being written. When I got married in the New York metropolitan area.

Not only did I (we) have to meet with the rabbi who was going to marry us (Rav Nathan Rosenbaum, A’H, who was my childhood rabbi- and also the rabbi of the synagogue where I was managing a catering hall) more than a few times, but we also had to go to the Meadowbrook Hospital (now called the Nassau County Medical Center) to undergo a special blood test.

New York had rules that Jewish folks who were getting married had to get tested for Tay Sachs disease. This disease, which destroys the neurons of the brain and spinal cord, renders an infant unable to sit, to crawl, or turn over. And, leads to a tragic death before the child reaches its pre-teen years.

Tay - Sachs abnormalities

Why did New York require such a test? Because, at the time, Jewish folk were more than 10% of the state’s population. And, if one were an Ashkenazic Jew (heralding from the German/British/Polish/Russian regions of Europe), the odds were horrendous that their genes would have an abnormal HEXA gene- and, if both parents had the marker, there was little chance a child born from that union would not perish from the disease. (It’s not just a Jewish affliction- Cajuns [who might have Jewish roots] from Louisiana, and French Canadians [but not French folks] in Quebec or New Brunswick were ‘granted’ such possibilities.)

When our tests came back positive (for one of us- the government test does not disclose who was/is the carrier), it was pretty clear that my fiance was a carrier. (I am a Sfardi Jew, whose relatives emanated from Spain in 1492- thanks Isabella and Ferdinand for the banishment.) But, with only one parent having the marker, the odds of a child being afflicted with Tay Sachs was pretty low. (None of our children were so afflicted. But, they have not been tested to discern if they are carriers. My youngest is about to find out- since he and his fiance [both residing in New York City] will be getting married soon.)

Which leads to the next “wonderful” blessing the Supreme Being afforded the Jewish people. OK- again for the Ashkenazic version of our heritage. Ashkenazi Jews have a high propensity for the mutated BrCa1 and BrCa2 genes. The two genes, which normally protect our bodies from cancer, are mutated among many Ashkenazi Jews to do the opposite- promote cancer.

BrCa1 and BrCa2 genes on Chromosomes 11 and 13

As you might discern from their moniker, these genes are associated with breast cancer. But, not just breast cancer- for women, the additional cancer is ovarian; for men- prostate cancer. (Pancreatic cancer chances are also elevated with these mutations.)

How big a problem is this? Well, around the world the chance of having the mutation ranges from 1 in 300 to 1 in 800. But, if you are of Ashkenazic Jewish heritage- your chances are 1 in 40. And, 85% of those women with the defective BrCa2 gene will develop breast cancer, while 40% will develop ovarian cancer. (Men seem to suffer at a 30% rate for prostate cancer and breast cancer.) It gets worse- of those folks who develop ovarian cancer, 40% have the defective gene.

Elizabeth Etkin-Kramer

Enter Dr. Elizabeth Etkin Kramer, a gynecologist from Miami Beach. Who recognizes these facts and has been proselytizing to Jews that knowledge is power. (She actually has founded a new organization, Yodeah, which means “know” in Hebrew. Yodeah is a non-profit promoting the testing and prophylactic care against cancer. No, she hasn’t gotten all her ducks in a row, so the website doesn’t really exist yet. )

Yodeah.org
Yodeah and Etkin-Kramer encourage folks to undergo a new, relatively cheap [$99] genetic test [spit in a tube; get the results a week later]. Her organization makes no money from the testing.

Now, just because you aren’t Jewish- or Ashkenazi- doesn’t mean you shouldn’t get this test. After all, there is a chance you are a carrier- and that means you have about a 0.25% chance of developing cancer over your lifetime.  (You do recall the headlines when Angelina Jolie had her ovaries removed – and a double mastectomy- when she found out she had the genetic abnormality- and she’s NOT Jewish.)  And, since there is now a prophylactic program for ovarian cancer (and for some breast cancers), we all need to spit up!

Roy A. Ackerman, Ph.D., E.A.

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2 thoughts on “Spit! Spit! Spit!”

  1. At least one of my cousins is a carrier. I am not. But breast cancer runs throughout my mother in law’s family (she had it twice, and several of her sisters had it. ) I believe my one sister in law has been tested and is negative for both of the BRCA1 and BRCA2 but getting the test was a difficult decision for her. My best friend, who was Jewish, had ovarian cancer in her 20’s. (She died in her 60’s from a different cancer). So yes, spit up!

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