On researching further on Tay-Sachs today and trying to find what other communities and articles are out there I came across a very interesting article online entitled ‘How a community stamped out Tay-Sachs disease with genetic screening’ by science editor, Mark Henderson for the Sunday Times.
You can read the article here (Times subscription needed).
It’s a myth that Tay-Sachs is exclusive to certain communities at present and this article also shows clearly how by raising awareness and offering screening the Ashkenazi Jewish community was able to reduce the number of children born with this terrible condition.
Unfortunately Tay-Sachs could be carried by anyone from anywhere and what the article clearly demonstrates is that more and more children are being born with Tay-Sachs to parents from all different backgrounds.
The reality is that Daniel is partially Ashkenazi Jew but having not have had any history on his family, neither him or his family were aware of being carriers of Tay-Sachs. And living proof of the statement above is our daughter, as I am portuguese and the gene I carry is so rare that had only been recorded once. We were told that had Daniel known he was a carrier and had I been tested for it, the screening wouldn’t have had included my gene therefore we would have not been alerted to the risk of conceiving children with Tay-Sachs.
Numerous organizations are now alerting people for genetic screening should there be history of certain diseases in the family or should they know that they are from a group at risk, my view is that although you cannot go into paranoia if there is any chance that there may be a risk of a child being born with such a terrible fate then screening should be made available and mostly it should be made known to future parents.
Most importantly information on carriers should not be lost within families and it important that those that know to be carriers alert their extended families to the fact so that all can be tested and eventually Tay-Sachs will be eradicated.