Jewish Ozzies' Inter.Net
The electronic voice of the Australian Jewish Community


" Tay-Sachs disease is one of the genetic diseases which affect Jewish communities worldwide. "


Do you enjoy being fit? Do you believe in stress management? Are you glad to be alive now and benefiting from today's advanced technology and scientific research? Are you 16-35 years old?

If yes, then you will want to take part in a special Health Risk Management Program (see appended questionnaire) that is designed to provide you with critical personal information which could save you a great deal of anxiety and possible long-term distress.

Tay-Sachs disease is one of the genetic diseases which affect Jewish communities worldwide. It is a fatal, incurable condition that affects children of Ashkenazi Jews. Symptoms first appear at about the age of 6 months, when an apparently healthy baby stops smiling, crawling or turning over, loses their ability to grasp or reach out, and gradually becomes blind and paralysed. There is no cure for the disease and death usually occurs before the age of five years.

Testing to determine whether or not you are a carrier of Tay Sachs Disease, Cystic fibrosis, Canavan Disease or Fanconi Anaemia is available right now in Australia. The test is voluntary and if you haven't yet taken it you are unnecessarily missing out on the benefits of proven modern medical research.

Recently, for example, a young Australian couple, now living in Israel, were expecting their first child. In the U.S. it is quite usual for couples to have blood tests before marriage and in Israel, although it is not compulsory, it is strongly recommended. It is not, however, such common practice yet in Australia. Not having attended Jewish day schools, which run a program for those aged around 16, the couple had missed out on the special schools program. Now, with a baby on the way, the couple were recommended to take blood tests. Testing for Tay Sachs (TSD) when someone is pregnant is less preferable however because not only is there a very slight risk of side effects but the test takes longer to develop and is harder to read accurately.

To the couple's great surprise, since the Jewish family medical history over previous generations is largely unknown, the husband was found to be a Tay Sachs carrier. The wait for results of the wife's test now became an ordeal. Were she, too, be found to be a Tay Sachs carrier the possibilities of the baby being destined for a very short life would be as high as one in four.

Had they both been tested prior to marriage the situation would have been altogether different. Test results are not immediately given out but stored, and password protected, for future reference . Prior to marriage or planned pregnancy couples submit their special pass numbers to the information bank and information relevant to their union is supplied. For example if only one of the partners is a Tay Sachs carrier the couple's risk factor for transmission of this disease is nil. If the couple are in the high risk category professional counselling is available.

Fortunately for our young couple the mother ultimately tested negative to Tay Sachs and has since given birth to a beautiful healthy baby. From personal experience she strongly recommends that everyone takes advantage of the great work done in Australia to make these tests easily available here. In this country where your doctor might not be aware of your genetic heritage and therefore high risk factor for carrying certain illnesses it is up to YOU to protect those you love.

If you are in the target age group you should print out, complete and return an important survey to Anne Proos <> . The organisers are interested to know how they can facilitate your participation. Would you perhaps like to go along with a group of friends or members of your young adults organisation? Let Anne know.

Good Health

Geraldine Jones
President, JOIN

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