General information about Tay Sachs


Tay Sachs

Tay Sachs is a genetic disease, which leads to progressive degeneration of the brain starting at around the age of six months.

There's no cure for Tay Sachs and all babies born with it die by around the age of four years.

The disease is most common amongst people of Ashkenazi Jewish descent.

Tay Sachs is inherited in an autosomal recessive manner. This means you're only at risk of having a baby with Tay Sachs disease if both parents are carriers. If both parents are carriers, there is a one in four chance with each pregnancy that the baby could have the disease. If one parent is a carrier but the other is not, there is no risk of having a baby with Tay Sachs.

Being a carrier does not affect your health, and you would have no way of knowing if you are a carrier unless you have been tested. Testing is done by a simple blood test.

Around in 1 in 25 Ashkenazi Jews are carriers of Tay Sachs. This compares to 1 in 250 in the non-Jewish population. Non-Ashkenazi Jews have a low risk of being carriers.

Who can be tested for Tay Sachs?

Ashkenazi Jews have the highest risk of carrying Tay Sachs disease. Non-Ashkenazi Jews carry a low risk. We are happy to test anyone of Jewish descent.

If you are a non-Jewish partner of a Jewish person, or if you are from any ethnic group with a family history of Tay Sachs (or the related condition known as Sandhoff disease), we can also test you if you wish.

How can I arrange a test?

If you require carrier testing for Tay Sachs and/or the other genetic conditions which are more common in the Ashkenazi Jewish population you can access this through the service set up by Jnetics charity and Northwick Park Hospital.

Alternatively, if you are a known carrier of any genetic condition (including conditions that are more prevalent in the Jewish population) then you can be referred to your local Clinical Genetics centre by your GP. 

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