Genetic Testing For Sephardic Jews Faces Reluctant Community

Screening for Muscle Ailment Provides Alternate Model

Breaking Taboo;  Dr. William Warren Brien (left), former mayor of Beverly Hills, at the annual Neuromuscular Disease Foundation Gala with Carolyn Yashari Becher, executive director of NDF, which funds HIBM research and seeks to raise awareness about genetic disease in Sephardic communities.
Neuromuscular Disease Foundation
Breaking Taboo; Dr. William Warren Brien (left), former mayor of Beverly Hills, at the annual Neuromuscular Disease Foundation Gala with Carolyn Yashari Becher, executive director of NDF, which funds HIBM research and seeks to raise awareness about genetic disease in Sephardic communities.

By Anne Cohen

Published August 11, 2013, issue of August 16, 2013.
  • Print
  • Share Share
  • Single Page

When Jennifer was 26, people started asking her why she was limping. An exercise enthusiast, she brushed aside the question. Then she noticed she couldn’t run laps in her kickboxing class. No problem, she thought — running wasn’t her thing. Next, she started falling behind some older women in Pilates class. By that time, she and her husband were planning on starting a family. Just to be safe, she decided to see a doctor.

Jennifer, a psychiatrist who asked that only her first name be published because she does not want her personal story revealed to patients, first saw a sports physician. He referred her to a podiatrist, who advocated surgery. Unwilling, she went to a physical therapist.

“You definitely have weakness,” she remembers him saying about her muscles. Though he didn’t think it was anything serious (“not genetic or progressive”), he sent her to a neurologist at UCLA. The medical fellow who examined her was a Persian Jew. He knew exactly what was wrong — it was genetic, and it was definitely progressive.

Jennifer has hereditary inclusion body myopathy, a rare, recessive genetic disease that causes late-onset muscle degeneration. The carrier rate in the Persian Jewish community is 1 in 15 — more common than Tay-Sachs is for Ashkenazi Jews. Cases of HIBM have also been documented among non-Jews, including Japanese, Caucasian Americans, Asian Indians and Kurdish Iranians.

Until recently, Jewish genetic diseases have been largely linked with Ashkenazi Jews, amongst whom aggressive prenatal genetic testing has effectively eradicated devastating conditions such as Tay-Sachs.

Click to see the rest of the section, Click for more stories about genetics.

Now, as the first generation of American-born Jews from Iran and other Middle Eastern countries comes of age, research is turning to diseases in their communities, which have not had the same institutional organizations as the Ashkenazim.

“I had never even heard of [HIBM],” said Jennifer, whose family came to the United States from Iran nearly 50 years ago. “It’s pretty emotionally traumatic to be standing in a room and hear someone tell you that. It shatters your world and everything your life is set out to be.”

Because of its high carrier frequency and appearance in a person’s mid-20s or early 30s, HIBM, of all the genetic diseases suffered by Jews from the Middle East, has gotten the most attention in the United States. Some hope it will be a model for implementing prenatal screening in a community where genetic disease is often misunderstood or carries a heavy stigma.


The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • Can you relate?
  • The Forverts' "Bintel Brief" advice column ran for more than 65 years. Now it's getting a second life — as a cartoon.
  • Half of this Hillel's members believe Jesus was the Messiah.
  • Vinyl isn't just for hipsters and hippies. Israeli photographer Eilan Paz documents the most astonishing record collections from around the world:http://jd.fo/g3IyM
  • Could Spider-Man be Jewish? Andrew Garfield thinks so.
  • Most tasteless video ever? A new video shows Jesus Christ dying at Auschwitz.
  • "It’s the smell that hits me first — musty, almost sweet, emanating from the green felt that cradles each piece of silver cutlery in its own place." Only one week left to submit! Tell us the story of your family's Jewish heirloom.
  • Mazel tov to Chelsea Clinton and Marc Mezvinsky!
  • If it's true, it's pretty terrifying news.
  • “My mom went to cook at the White House and all I got was this tiny piece of leftover raspberry ganache."
  • Planning on catching "Fading Gigolo" this weekend? Read our review.
  • A new initiative will spend $300 million a year towards strengthening Israel's relationship with the Diaspora. http://jd.fo/q3Iaj Is this money spent wisely?
  • Lusia Horowitz left pre-state Israel to fight fascism in Spain — and wound up being captured by the Nazis and sent to die at Auschwitz. Share her remarkable story — told in her letters.
  • Vered Guttman doesn't usually get nervous about cooking for 20 people, even for Passover. But last night was a bit different. She was cooking for the Obamas at the White House Seder.
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.