1 in 5 Ashkenazi Jews is a carrier for at least one of 18 preventable genetic diseases.
I heard two very powerful stories today. One from someone active in our Jewish community right here in Atlanta, the other is a Reform rabbi and colleague out in Pennsylvania. Both love their children unconditionally and are devoted to them. Both have children with a genetic disease that could have been prevented if health care professionals, rabbis who do pre-marital counseling, and Jewish communal leaders would have worked together to make sure our couples who are planning on starting their own families had the facts about genetic diseases in Ashkenazi Jewish circles.
At one point, everyone knew about Tay-Sachs Disease and you hardly hear about it anymore. Our community organized to get the word out! Today, the number of Ashkenazi Jewish babies borth with Tay-Sachs has decreased by 90%. For many Jewish couples, their doctors still routinely check for Tay-Sachs Disease. Maybe they also tested for one or two others.
But today, there are eighteen Jewish Genetic Diseases which we need to be aware about. With greater research and better technology, genetic testing is more accessible, more affordable, and is able to screen for more diseases that potentially affect Jews of Ashkenazi descent.
Here were two couples who were screened…but weren’t screened for the whole panel of known Jewish Genetic Diseases. The saddest part is that the technology for screening was available for both of these couples. For one, their daughter was diagnosed with Mucolipidosis Type IV — a disease characterized as a progressive neurological disorder with variable symptons beginning in infancy. Characteristics include muscle weakness, severe intellectual disabilities and eye problems. One in 125 people of Ashkenazi Jewish descent are carriers for this genetic disease.
The other family has a story about them in The Forward. Read about Rabbi Lawrence Sernovitz and his family and what he is doing to spread the word. Their son is diagnosed with Familial Dysautonomia, which causes the autonomic and sensory nervous system to malfunction, affecting the regulation of body temperature, blood pressure and stress response, and causes decreased sensitivity to pain (which is essential since it tells us when we are in trouble, injured, or a problem is occuring). One in 30 Jews of Ashkenazi descent are carriers for FD.
For those of you in Atlanta, there is going to be another public Screen on Monday, May 16. All the info you need is here at Atlanta Jewish Gene Screen.
If you think you are unaffected because no one else in your family history has been touched by this, you should still get screened.
If you think you are unaffected because you are in an interfaith relationship, still get screened. You don’t need to have Ashkenazi Jewish ancestors to be a carrier…your chances just increase. Get screened.
If you are of Sephardic Jewish background, there is a different list and any of these agencies listed can help you determine with your physician what you should get screened for.
I am taking my own stand in this. If a couple will not undergo a screening, I won’t be the rabbi to officiate at their wedding. I am sensitive to the costs of weddings…I am. However, if our children can spend thousands on the DJ, band, photographer, and cupcakes, then we can make sure there is enough money (perhaps with the help of their families, rabbis, Jewish community leaders, and after some good old fashioned advocacy to insurance carriers and providers) to make sure that their future children will have the greatest chances as possible to born healthy and strong.
So friends, who can you forward this message or these websites to?
If you are getting married or thinking of getting married, what are you waiting for?