Cyberspace support groups for Jewish genetic diseases

There are many times that the Internet is criticized for being a world wide waste of time. And far too often, those criticisms are completely valid. But used properly, the Internet can be a critical tool for joining communities and perhaps even saving lives.

In the June 23 Bulletin, we began our look at the information about Jewish genetic disorders on the Internet. Today, some people are using the Internet as a way to find out more about their diseases and even search for a cure. Once again, a caution that the Internet should not be considered a substitute for trusted medical advice.

The best place to start is at the National Foundation for Jewish Genetic Diseases Web site at The Foundation has supplied online information and Web links about the genetic diseases which are more common among Jews such as Bloom's syndrome, Canavan disease, familial dysautonomia, Fanconia anemia, Gaucher disease, mucolipidosis IV, Niemann-Pick disease, Tay-Sachs disease and torsion dystonia. For a good explanation of how diseases are inherited, I recommend the Albert Einstein Healthcare Network Web site at jewishgenetics.

Another excellent way for someone trying to learn more about a rare Jewish disease is by meeting others who are facing similar challenges. You can join that world-wide community through e-mail lists such as the genetic-disease list serve at genetic.htm and the genetic disease e-mail discussion list at You must supply your name to join the discussion list but that information will be kept confidential.

Other people looking for help are setting up their own Web sites. Dr. Jeffrey Bornstein suffers from chronic myelogenous leukemia, a fatal disease of the bone marrow. After it was determined that a suitable bone marrow donor could not be found in his immediate family, he broadened his search. Since the odds of finding a bone marrow match are best within the extended family, Bornstein's friends have built a family tree for him after searching vital death records, cemeteries and the Internet.

With the help of Dr. Simon Kreindler, a friend of the family, and some important Internet contacts, they created the Jeffrey Bornstein Bone Marrow Search Web page at seflaum/Bornstein.html. There was an immediate response. "We were inundated with e-mail from all over the world," Kreindler said. The Web site also helped mobilize interest in bone marrow clinics and gained attention from papers ranging from the Forward at BACK/1999/99.12.17/news2.html to the Raleigh News & Observer to the Canadian Jewish News. The search for a match for Bornstein continues.

One of the people who advised Kreindler is Stanley Diamond. About a decade ago, Diamond discovered that he is a carrier of a mutation of beta-thalassemia gene at The gene doesn't affect carriers themselves but could be a "ticking time bomb" for descendants who marry other unsuspecting carriers. He warns that since beta-thalassemia is so rare among Ashkenazi Jews, there is a good chance of misdiagnosis — unless families at risk are contacted. Children of two carriers have a one in four chance of inheriting the fatal disease, thalassemia major.

Diamond has spent years building his family tree and tracking down and warning other carriers. Along the way, he was founding president of the Montreal Genealogical Society at and is project coordinator of the Jewish Records Indexing — Poland Project at Many of the lessons that Diamond has recorded on his own Web site apply to anyone investigating a genetic defect in his or her family at

One important article explains how to include medical information on your family tree — and even how to ask potentially difficult questions of elderly relatives at genetics.htm. Diamond warns against waiting. "The two words genealogists dislike are 'if only.' If only I had listened to Bubbe when she talked about her youth…if only I had written down all those endless stories my father used to tell about his grandparents…It is no different for the family historian who seeks to record his family's medical history. Talk to the older generations now!"

The writer is a Toronto-based television producer who writes, lectures and teaches about the Jewish Internet. His columns alternate with those of James D. Besser. Mietkiewicz can be reached at [email protected] .