Jewish Health

I was doing research work on enzyme deficiency diseases at that time. And ironically Tay Sachs Disease was on the list, although I didn’t know much about it, it was just on a list of things to do at some time. Well I switched straight away. I researched onto Tay Sachs disease and it took a couple of years for it… nothing was known, the enzyme at the time wasn’t known. We didn’t know what it was. We had an idea but didn’t know. We made a mistake and thought it was a single enzyme. In fact it was three enzymes, only of which two were involved in Tay Sachs disease.
 
That stopped us for a while. But in two years we’d managed to elucidate what the system was and we came up, very luckily indeed, it was a bit of luck. We came up with a diagnostic simple diagnostic procedure to test for Tay Sachs disease, for carriers of Tay Sachs disease and it turned out that could be done, and you know we could test a mother who was bearing a child from eleven weeks onwards. We could test whether the child was a Tay Sachs child. And if so, they could terminate it, at their, at their wish.
 
And from then onwards we no longer wanted to try for a child to be honest. And our GP and our consultant said that you’ve had enough. It was enough. It was enough for my wife I can tell you. It was a terrible period of time. The trauma was indescribable really.
 
We then ... I worked with [hospital name] and they had other patients and we all got together and in those days we formed known as the Tay Sachs Foundation which was a foundation to deal with similar people. It was later taken over by Jewish care, who operated then, and still operate a Tay Sachs screening programme, which screens potential people who are of Jewish origin, although that’s not, we don’t stick to Jewish if necessary, but of Jewish origin. And particularly of Ashkenazi origin, where they’re the highest risk patients. And we counsel, and my wife and I are counsellors for Tay… for Jewish Care.
 
We counsel and we’ve counselled many people and told them what the position can be, and how to deal with it in the best way possible. And there it stands at the moment. Really the test that we devised, my team and I devised in 1967 still remains, it’s exactly as was, with the addition of a DNA which we weren’t involved with. DNA wasn’t elucidated at that time, or certainly the test weren’t. But DNA is not as accurate in its, in its diagnosis because it depends on whether… the maximum risk is from Ashkenazi Jewish persons. And out of the biological test, the enzyme test that we devised is non specific for anyone. It will just test whether the enzyme is there or not. The DNA is different, the DNA you have to programme it to look at a particular gene to see whether that gene is, and there’s four genes involved, three particular in the Ashkenazi’s.
 
They’re different in different religions. They’re different in different sects and so on and nationalities, Tay Sachs disease is not specific entirely to the Jewish religion. It’s a 40% risk factor for the Jewish religion, and all else are 60% and that’s quite a lot of all elses.
 
The, the interesting thing is that since we ran this programme with Jewish Care, which is education to start with. We educate the Jewish community. [Name] and I we go to schools, and I give a talk for about an hour to the sixth form and uppers on the disease and what can happen, and what should be looked at. Within a week or two we then run a free screening programme at the school and we check the students out, and we… they’re told quite directly and no one else is involved except their GP, whether they’re carriers or whether they’re not.
 

And as a result of years of doing this

I suppose only in the sense that illness and Judaism seem to go together. You meet so many Jewish people who have so many health problems. It’s almost like if you’re Jewish you’re going to have health problems, you know, and yet I know a lot of Jewish people who are perfectly healthy and fit and well. But it does seem to me that a lot of Jewish people that I know do have health problems and some of the problems are quite major. It’s something you live with I think, because it’s almost a hereditary thing and within the genes it sometimes makes it a bit easier to deal with. You know, you are stuck with it. These are in your genes. Does that make sense? 

Well it’s one of those unlucky functions. Every time a cell divides in the human body, meiotically, not mitotic, you know, to form a sex cell. Every time that happens you have, I look at it in awe, at the complexity that that, that, that takes. It’s a massively complex thing and to me it’s in wonderment that these things don’t happen all the time, and that other things don’t happen, but they don’t. It’s amazing. So I’m just one of the unlucky ones that the, the mutation occurred and unfortunately in one of the genes that caused the problem. I don’t, I don’t have any bad feelings about it. As I say to you if I were to look at my total genome and I was able to look at every single gene in detail to see whether it was normal, abnormal or what. I think I’d be horrified at the result I would find. It’s just that some of these don’t come out. You know, I mean I’ve gone bald. I went bald at an early age. That’s a genetic function. So what? I mean it’s unfortunate.  

And so my younger daughter, I took my younger... but here they have regular adverts in the Jewish Chronicle, and once every two or three months they have Tay Sachs screening days and you can go, when it’s normally in a, I wouldn’t say a church hall, but clearly it’s not, it’s in a hall somewhere in Golders Green. And you go and that’s run by the Tay Sachs Society. And you have blood taken there and when my daughter gave her name to the, the person that was coordinating it, she said, “Well why are you here?” and I then discovered that these particular cousins were volunteers so they clearly, their children did have Tay Sachs Disease because they do internal audits. And then she was tested and she too was a carrier of Tay Sachs.  

As a result of my experience I do hope that in England they do take on screening for FD because it’s not a nice life to have for anyone. And I think people should be educated about these conditions so that they know what is out there, and this is one of the things, why I’m happy to do this, so that people know what life is like with these conditions. And hope that they do get tested and if they do know anyone that has similar symptoms then they should test definitely. Or think that it might be this, because it’s no joke, diagnosis is important if you want the right treatment.