Carrying On: Jewish Genetic Disorder Awareness Must be at Forefront

As individuals who are part of the Jewish People, we have specific traits, traditions, beliefs, and a shared history that make us who we are. These things are unique to us and highlight the aspects of our identity that make us distinct and special. For instance, we share in our passion for giving back to the community, through mitzvot. We come together on issues regarding the safety and security of our homeland, Israel. We have a respect for and honor the Torah and use it as a tool to guide us in our actions through life. As Jewish People, we have many things that tie us to one another, things that are distinct to our culture and community. These above-mentioned layers are all beautiful and offer us a way to bond with others who share these similarities. However, there are some things that are unique to us, which are not celebrated. In fact, they can cause life-changing and life-ending consequences. These are genetic diseases linked to the Jewish community. And we need to continue to spread the word about their prevalence in our community, the need for heightened support services and greater attention to research and treatments.

There are a number of genetic diseases including Gaucher disease, Bloom Syndrome, Canavan disease, Niemann-Pick disease, Fanconi Anemia and Tay Sachs for which persons of Jewish heritage are more likely to be carriers than the general population. Carriers of these genes may be unaffected and even unaware of the genes that they carry. It is when both parents are carriers of a gene mutation for the same condition, that there becomes a 25% chance of having an affected child and a 50% chance of having a child who is a carrier as well. It has been estimated that one in seven Jewish individuals is a carrier of one of the aforementioned diseases. These diseases are all serious and can be fatal and or life altering to people born with them.

In October, we recognized Breast Cancer Awareness Month. You may not be aware that the BRCA gene that is linked to breast cancer occurs more often in Jewish women of Ashkenazic descent. “For a long time, as a youth, we saw a pattern of breast cancer in our family, but there was not enough research back then to identify genetic predispositions, and certainly no proactive measures you could take, such as voluntary mastectomy, to help decrease your chances of getting it,” says Claire* a JFCS Family Assistance Program client who was helped this past year by JFCS services, funded through the Walk 4 Friends and Family with Cancer that takes place each spring. “I lost my mother and grandmother to it, and suffered through debilitating chemotherapy and surgeries. My daughter opted to have both of her breasts removed, to reduce her chances of getting cancer also. JFCS and the support services they offered, helped both of us get through some very trying times.”

It is important to note that there are different genetic concerns for people of Ashkenazi Jewish background (Germany or Eastern Europe), and persons of Sephardic or Mizrahi Jewish background (Mediterranean, Iran/Persia or Middle Eastern). Currently, carrier screening for 19 genetic diseases which affect persons of Ashkenazi Jewish heritage are available. With advances in genetics, this list is likely to grow in the future. There are currently 16 genetic diseases that affect people of Sephardic and Mizrahi Jewish heritage for which screening is available. Screening recommendations are based on geographic origin.

Just as we share a bond with others of Jewish lineage, we also share the responsibility for awareness, fundraising, and efforts to spread the word on genetic testing. JFCS offers a list of potential Jewish genetic disorders and a list of resources for those who may be at risk for these diseases on our blog, at WEBSITE. In 2015, JFCS, in partnership with the Basser Center for BRCA of the Abramson Cancer Center, will be hosting BRCA gene seminars in partnership with our local synagogues and sisterhoods. Please look out for dates after the new year. As a community we can unify to promote a better quality of life and chance of survival for those who may be carrying or affected by these genetic disorders. I encourage each of you to reach out to me with thoughts or questions, at, or 856-424-1333.


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