And I just yesterday, by complete coincidence come across a letter that is sent to my professor in Israel which was quite amazing how accurate his prediction was, how accurate his diagnosis was and it’s particularly amazing, now we have got to know now that it is a condition that is privileged in the, amongst the Jewish, Ashkenazi Jewish population that it took such a long time to diagnose, it took them a five year period from the first manifestation until they had a diagnosis – in Israel. And we did see the best neurologist in Israel.

So the lack of knowledge is quite, in this respect, is quite mind blowing. At first we had to go to the UK to get the diagnosis of what would appear today, rather obvious. Because it is the absolute typical cause of the condition, early onset at the age of eleven, beginning at puberty and starting slightly in one limb, it’s quite normal for it to start in the leg, and slowly develop into other limbs and parts of the body.

So it ticks all the boxes in the diagnostic book of torsion dystonia and yet in spite of seeing three or four of the top neurologists in Israel the diagnosis wasn’t made at that point. It wasn’t until I came back from visiting Professor A that it was they could confidently say what it is. And from then send me to millions of tests and MRI’s and lots of different tests, I’m sure they electrified every bit of my body to see what it was, and yes, they were able to identify it.

Stewart:And then about a week or so later, eventually they decide that I can go back on the ward. So I go back on the ward, and the nurse is there who actually sent me down to Intensive Care. She was surprised to see me, she didn’t think I was coming back. She told me. Within a couple of days, they are wheeling me out of the ward, which was a ward of five beds into a private room. I said, Well what’s happening now? You’ve caught MRSA.

Marilyn:And that was to boot.

Stewart:So I now spend five or six days on my own in this ward.

Marilyn:And he’s not getting any better.

Stewart:And I’m still not getting any better.

Marilyn:And he’s losing more weight.

Stewart:I’m losing weight. I’m not going to the toilet as I should be going. I’m still being fed through a tube, and then I think one day, Marilyn had something came to her.

Marilyn:I was standing outside and I really thought we weren’t going to bring him home. And I don’t know something just clicked in my, back of my mind. I was desperate. I’d looked everywhere. I’d spoken to people. I’m not unintelligent. There was something not right. Something had been missed.

Something clicked in the back of my mind about my niece. And they’re not blood relatives and I thought this has got to be a million to one chance. And I stopped one of the doctors who were phenomenal. I’ve got to say. And I said to them, Has he been checked for Factor XI? And she said, Well no. We checked for haemophilia which is normal. But we don’t check for factor XI. I said, We are Ashkenazi Jews. I said, Just something that’s clicked in my mind. So she said, Well that test will take a couple of days to get the response from. She said, But okay I will do it. She phoned me that evening. As I said, we were in [hospital]. And they were superb and really kept me in the picture, and she said, I’ve done the blood test. And that was on a Friday evening. She said, I’ll get in touch with you Monday, Tuesday, when I get the results. She phoned me the next morning to say, Its factor XI. We know what we’re doing.

I started going to the GP first of all with it, and he was giving me things like Colofac, nothing very much to be honest with you. Then, he said to me, eventually, after about a year or so, he sent me to [Hospital] to see a specialist there.

I went to see [Professor ] and by that stage I was down to about, I think about six stone. I was never heavy, not as heavy as I am now, but I was always maybe nine stonish. But I’d gone down a lot, and eventually I’d gone down to about four and a half stone. And I kept going in to him I just wasn’t well. I was feeling sick. He was doing tests, but nothing major. He eventually, after about two years ago, after going privately, her eventually said to me, about, he thought I had anorexia and I should go and see a shrink. And I said, No. I said, I do not have anorexia. I knew I did not. I’m not that stupid. I said, No, I do not have anorexia. I didn’t know what it was, but the pains were violent, really bad in my stomach.

And eventually, anyway, after about two and a half years, I had a friend who was a radiographer in the hospital, he was the head radiographer in the hospital, in [hospital]. And my husband contacted him, because I was just getting sick all the time. I would sit up against the radiator to try and kill the pain. I would sit up against the radiator trying to get the heat through me. I thought maybe that would do something for it. But after, it was after, it was after two and a half years roughly, after I’d been going to [Professor] that I went to see this fellow in… and I’d had loads of tests done… and I went to see this fellow, [doctor] was his name. He was the head radiographer. And he said

You had going to see the radiographer.

Yes. So I went to see [doctor] and he said to me, when I explained the whole thing to him, and he said, I’ll try one test and see. And I don’t know what it’s called, but they put a tube down. It was horrible. It was the most horrific I’ve ever had done, and I never want to have it done again. They put a tube down your nose and down your throat and it goes down into your bowel. And they put you then, I can’t remember do they pour, as far as I can remember they poured something down through the tube. I think it colours the inside of it or something. And then they did sort of x-rays to see what was wrong. And within, I would say ten minutes of having those tests done, he came out and told me that I had Crohn’s.

Then in 2001 after a series of investigations to try and sort out the Crohn’s Disease problem which continued to rear its ugly head again, and this involved having a radioactive breath test, which was a bit dodgy, and breathing into these tubes for twenty four hours and they were able to determine that there were a series of very nasty bacteria in my gut. And the way to deal with this nasty material was to have a six week course of different antibiotics.

Now I persevered with this over the summer holidays, what an idiot I was, I should have done it in term time, because it was just awful. It was an awful summer holiday because it was just like diarrhoea only magnified by five or six times, because these antibiotics were going through me and washing me out completely.

Anyway at the end of the course, things did actually improve dramatically and I felt really, really well. And I thought whey this has done the trick. And then a couple of months later I started bleeding from the back passage and bleeding and bleeding and I went back to the consultant and unfortunately I didn’t see the consultant. I saw a junior doctor. And junior doctor said, Oh well, we’ll do a blood test And the bleeding continued for another couple of months I think.

In the end urged on by doctors I knew I made an appointment to see the consultant and I insisted on seeing the consultant this time. And as soon as he heard what was happening, he arranged for me to have a colonoscopy and from that it was discovered that I had a small cancer in my lower rectum.

And I said, Well this is amazing. I was told years ago by my GP that because I had Crohn’s Disease it meant that I was unlikely ever to have cancer of the bowel And the reply I got was that they’d changed their minds and now it seems that if you Crohn’s Disease you’ve actually more likely to get bowel cancer. So that was a bit of a blow.

And, because the cancer appeared in the lower rectum, it mean that the operation I would have for this would be pretty drastic and involved the whole of the lower part of my bowel being removed everything my back passage disappearing completely, it was sewn up and being fitted with a colostomy.

This was a pretty awful thing to contemplate and I said, What would happen if I didn’t bother to have the operation And the surgeon just shrugged his shoulders. I mean he could have been a little more eloquent, but I suppose that said it all really.

Well I went into hospital to have some surgery. I was having a repair job done and I had the surgery, and ten days later I was to have the sutures removed, and just before that I started to bleed. At the time they just tried to stop the bleeding, and I went up and had sutures removed. And the bleeding just continued. They couldn’t stop it. So after a day or so I was taken into intensive care, and then I was whisked back up into the theatre to have another repair to stop the bleeding. And I was re-sutured, brought down, everything was fine, kept under observation and I started to bleed again. This was another week or so after and I was taken up to surgery again, and re-sutured again. I came down and a week later started to bleed again.

I was given blood transfusions at that stage. I had blood going in. I don’t know how many pints of blood they put into me, but eventually, my original physician who was working in the hospital bumped into my husband and he said, Have they checked all the factors? And he said, Well I’ll find out. He mentioned it to the surgeon and eventually the Head of Haematology came in and he said, I’m going to take you back up and check again. So I went back up. I was waiting on the trolley, waiting to go into surgery again, and my surgeon came rushing into me. I was heavily sedated, and he said to me, Where were you born? I said, I was born in England. And he said, Well where were your parents born? I thought, this is crazy, what is he asking me questions like this for? So, the next minute, I said, Well my father actually was born in Romania, my mother was born in Scotland and Well where were her parents born? So I said, Well my mother’s parents were from Poland originally. Of course my father was born in Romania, but my mother’s parents were born in Poland. And he said, That’s it. We’ve got it.

My mother was diagnosed with breast cancer in, in January 1992, and after she was diagnosed I went to my GP and said, Could I have a mammogram And he said, No. You’re too young Because under the National Health, they only grant them sort of every three years once you get to the age of 50 which actually means that the first time you could be called you could be nearly 53, if the records are up to date. I was called at 53!

Anyway I suppose I should have made a fuss, but I didn’t. And I just thought, well I will pay and I will go to the Well Woman Clinic and I’ll have a, the check up, and I’ll have a mammogram.

Anyway as a result of that I did go. I subsequently then went to study in Israel for a year (1992-1993) and registered with a student health service and had a totally different experience. When I just had to fill in a form about my health situationmy health status and family, family background, the minute they saw that my mother had been diagnosed with breast cancer, they said, Oh well, we’ll send you for a mammogram

And they sent me straight away for a mammogram as just part of preventative things. And at that mammogram which was like just a year after my first one in UK, they actually found something that they thought might need further looking at, so they sent me, and I had… it was examined and I had fine needle aspiration and an ultrasound and they said, it was actually just thickening, it was just sort of like a cyst. Nothing necessary to worry about, but it should be watched. So they would give me a letter for when I returned.

So once I returned in Sept 1993, I had this letter, that I should be followed up, and because, at that stage I had private health insurance through my work, I decided that I would take, use that opportunity and go to a doctor that was recommended, and have it checked out.

So after that I actually was able to have annual check-ups and twice things have been found, but then they were just cysts. So in 2000 when I got my little card from [doctor], who was the physician that it was time for me to come for my check, it was actually the week before I was having exams. I was studying part time and I was doing an MA in Holocaust Studies at UCL and I thought, you know I could put it off until after the exams. And I said that’s just a check up, I might as well just go. I can go on the tube and
Anyway I went. And it was already Stage II. So if I hadn’t actually been sort of taking initiative myself, I think by the time it would have been found, it could have been too late, you know. I felt sort of in a sense, in that sense, probably a big let down by the health service. I mean I maybe should have pushed, but on the other hand, you shouldn’t have to push to get good preventative care.

Okay. So my childhood was dogged by my father’s mantra, which was Have your bowels been opened [laughs] And I suppose I became a bit paranoid about that, so I have a strong suspicion that my father’s paranoia about having one’s bowels open transferred to me. And, whether that affected my subsequent history I don’t know, but certainly as a child I suffered from stomach pains quite a lot, and this got progressively worse when I was at the secondary school, which I didn’t like. In fact I hated secondary school.

So any excuse to have the day off was something I took very easily. Whether it was bunking off or just being genuinely ill I’m not sure, but that’s what I did. But it got worse and worse, so that even though I managed to get into sixth form I didn’t stay for the full course. I left in my first year, not exactly ignominiously but it was something I wasn’t particularly proud of.

I managed to get a job at Unilever in an office and they said, As long as you’re not ill or anything, you’re okay But I was constantly being ill with diarrhoea and stomach pains. So I had been under [hospital], which is quite a famous hospital for gastrointestinal problems. But they never seemed to be able to pinpoint what my problem was. And eventually they, kind of washed their hands of me, and their parting shot, or the parting shot of one of the doctors as I was leaving from my examination was, Oh by the way, don’t drink so much And I didn’t have a clue what he meant by this, whether he meant don’t drink too much alcohol, which I didn’t anyway or just don’t drink fluids. But that was all he’d left me with, you know. Off you go into the great wild world and don’t drink too much.

So, nothing improved, whether I drank or not anyway. So eventually my sister, [sister], who was a nurse at the time, suggested I go to a private doctor. At that time I thought wow a private doctor that’s something like £5 an hour’, which was almost two weeks of my then wage. But I did go and I saw a [doctor], who interviewed me, examined me, and arranged for me to have an X-ray on the NHS and he called me back after the X-ray was done and completed and said, You’ve got Crohn’s Disease Just like that, and I’d been going to [hospital] for I don’t know how many months or years even, and they’d never been able to diagnose anything, but as soon as I went privately, I was diagnosed with Crohn’s Disease.