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 are entitled to NHS treatment and live in London (or the surrounding areas) the test is free and you can come to our walk-in clinic at Guy’s, arrange an appointment at Barnet General Hospital, or ask your GP to take your blood tests. Open the tabs below for more information.
We provide a walk-in clinic for Tay Sachs carrier testing. You do not need a referral or appointment, you can just turn up
Frequency: Weekly on Mondays, 9.30am-11am (except bank holidays)
Location: Clinical genetics, 7th floor Borough Wing, Guy's Hospital
Tel: 020 7188 1364
Clinic staff: Eshika Haque and Bee Lotter, genetic counsellors
Remember to bring your GP details with you.
If a woman coming to the clinic is pregnant, we would advise both partners to come to the clinic together.
You could arrange an appointment at Barnet General Hospital on a Thursday morning. Blood tests are by appointment only.
You can book online or call 020 8375 1471 to make your appointment.
If you are entitled to NHS treatment and live outside London, your GP can refer you to a clinic closer to your home.
If you are not entitled to NHS treatment, a private doctor could take your blood and send it to the doctor’s laboratory.
How long will it take to get my results?
Routine test results are sent out within 4 weeks. Urgent test results (ie. in pregnancy) are sent out within 2 weeks.
Testing for other disorders at the Tay Sachs clinic
Although many people have heard of Tay Sachs disease, there are several other genetic disorders commonly seen in the Jewish population. In Israel and the USA, additional carrier tests have been added over time. These can be done as part of a ‘panel test', alongside Tay Sachs carrier testing.
The NHS has funded Tay Sachs screening for many years, but not any additional tests. We now offer an additional panel test as a private test when you come for an NHS Tay Sachs test.
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Bloom syndrome (1 in 100 Ashkenazi Jews are carriers)
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Canavan disease (1 in 40 - 57 Ashkenazi Jews are carriers)
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Cystic fibrosis (1 in 25 - 29 Ashkenazi Jews are carriers)
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Familial dysautonomia (1 in 30 Ashkenazi Jews are carriers)
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Fanconi anaemia type C (1 in 89 Ashkenazi Jews are carriers)
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Glycogen storage disease 1a (1 in 71 Ashkenazi Jews are carriers)
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Mucolipidosis IV (1 in 100 - 125 Ashkenazi Jews are carriers)
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Niemann-Pick disease type A (1 in 90 Ashkenazi Jews are carriers)
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Tay Sachs Disease (1 in 26 - 30 Ashkenazi Jews are carriers)
More information about these conditions can be found on the Jewish Genetic Disorders website.
The additional panel test costs £330 per person. The NHS Tay Sachs carrier test is still free.
You will see a poster about the panel test in the Tay Sachs clinic. We will also give you an information leaflet. If you are interested, a genetic counsellor will answer your questions and take blood samples. You receive the results in 2 - 4 weeks.
We can store your blood for up to 7 days if you’re not sure whether to have the test. Don’t forget, you can decide to have just the NHS Tay Sachs test, which is free.
We will be offering this private test as a pilot service to see the levels of interest in this extra test.
If you have a family history of any genetic condition and would like to be referred for a full genetics assessment, then please ask your GP to refer to your local genetics clinic in writing.
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