When being incompatible can kill

When being incompatible can kill

By 1983, Rabbi Josef Ekstein had lost four children to Tay-Sachs disease. That year — in an effort to prevent future suffering by afflicted children and their parents — he started Dor Yeshorim ("Generation of the Righteous"), a non-profit organization that screens Orthodox youngsters for genetic diseases. So far, some ‘00,000 individuals have been tested.

Chaya Feuerman, the group’s director of operations, explains that DY, with offices in both Brooklyn and Israel, has several goals. "We want to eradicate Ashkenazi Jewish recessive genetic diseases from our communities," she says, "and to provide confidential pre-marital screening" to detect carriers of mutated genes.

Representatives of the organization visit Orthodox schools, synagogues, colleges, seminaries, and "any observant group that invites us in." Given the aversion of the Orthodox community to abortion, says Feuerman, Dor Yeshorim is targeting that group to "prevent situations where they are faced with this moral dilemma."

On May 7, Eckstein will speak at Cong. Bnai Yeshurun in Teaneck, following a buffet breakfast. Feuerman says the program will begin with a short video chronicling the experience of one family dealing with genetic disease.

"That usually makes them cry," she says. "Then we have an M.D. or Ph.D. talk about the issue from a medical perspective, so they see we’re not just ‘people from Williamsburg.’" Teaneck resident Dr. Larry Stiefel will be one of the presenters at Bnai Yeshurun.

Dor Yeshorim tests for 10 potentially fatal and severely debilitating genetic diseases commonly found in the Ashkenazi Jewish population: Tay-Sachs, Familial Dysautonomia, Cystic Fibrosis, Canavan Disease, Glycogen Storage Type 1, Fanconi Anemia Type C, Bloom Syndrome, Mucolipidosis Type IV, Neimann Pick, and Gaucher

Feuerman points out that the marriage of two individuals with mutations for the same disease can result in offspring that will manifest that disease. While simply being a carrier in no way affects the health of an individual, if that person marries another carrier of the same disease, the risk is one in four for each pregnancy of producing children with the condition.

"We try to educate individuals to get tested early in a relationship — preferably before the first date — but at least before a couple becomes emotionally involved," she says.

So far, testing has prevented 770 "Jewish marriages of genetically incompatible matches," she adds, noting that the group received a letter from Kingsbrook Jewish Medical Center thanking them for their efforts in successfully reducing the incidence of Tay-Sachs.

Feuerman stresses that, to assure the confidentiality of every participant, names are not used. Rather, those who come for testing receive ID numbers and provide only the day and month of their birth.

The policy of Dor Yeshorim is not to reveal carrier status even to the participants themselves, except in the case of incompatibility, since carrier status "can lead to anxiety, embarrassment, feelings of inferiority and depression."

Clearly, the system only works if both people seeking a shidduch are tested, and "that cannot be forced," says Feuerman. "But maybe a girl can refuse to go out with someone who has not been tested." Also, she says, "exchanging ID numbers should never be considered a commitment."

For further information about Dor Yeshorim, call 718-384-’33’.

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