For three days in April, about 70 families whose lives have been upended by Tay-Sachs disease gathered in San Diego for the annual National Tay-Sachs and Allied Diseases conference, including support group sessions and a candle-lighting ceremony honoring those who had died.
Tay-Sachs is probably the best known “Jewish” disease. As many as one in 25 Ashkenazi Jews is a carrier of the defective recessive gene. Yet, among the conference attendees, who came from as far away as Poland and Guatemala, only a handful were Jewish.
Today, the vast majority of babies born with the disease are not Jewish. But unlike Jewish parents-to-be, non-jews are rarely advised to get prenatal screening for Tay-Sachs.
Read the full, original story here: Non-Jews hit by ‘Jewish’ diseases fall through the cracks of genetic screening
- Tay-Sachs Disease Information Page, National Institute of Neurological Disorders and Stroke
Review the basic facts of Tay-Sachs disease at this site from the NINDS.
- Noninvasive prenatal testing, Mayo Clinic
Learn about prenatal genetic screens.
- How Much Do You Want to Know About Your Unborn Child’s DNA?,” Huffington Post
One woman’s opinion on the pros and cons of prenatal testing, in this case, for Lynch syndrome, a disorder that increases the risk of developing certain types of cancer.