The patient who changed my life | Prof John Isaacs | TEDxNewcastle

thank you very much Lucille okay so this morning I'm going to tell you two stories one's about me and my science and as a bit of story of serendipity bit of perseverance little few of the things you've already heard today and the other story is about you actually and about how you can help move on medical science and and innovation so let's start with with my story so if I go back about 25 years I was a junior hospital doctor cruising along enjoying myself but not really quite sure what I wanted to do with myself I don't know what speciality I wanted to end up in I just enjoyed what I did um at that time I was actually training in Riedl medicine just by chance that's what I was doing and this brought me into contact on a daily basis with the scientific disciplines I haven't really thought about since medical school cause it was so difficult and that was immunology now the reason I was introduced to immunology I guess there were two reasons one was that I was seeing patients every day with kidney disease whose disease was really driven by what we now call autoimmunity their immune system that should have been fighting infections and bacteria for reasons that we stood at understand very well was sort of turning inwards and attacking their owner and on the kidney ward you saw patients with kidney failure because of this sort of disease things like lupus vasculitis you may have heard of some of these conditions that was one thing the other thing is the paradoxically was on the transplant water I saw patients who had had kidney failure perhaps due to lupus and now they had a transplant and actually it was the immune system that was now attacking the transplant in this situation the immune system was doing what it meant to do it was attacking something that was foreign but of course from the patient's perspective this wasn't very good because they wanted to keep that kidney they didn't want to reject it so there were two instances where I saw the immune system in action and what did we do with those patients well in those days we gave them a cocktail and twister don't we still do a cocktail I'm not very nice drug things like steroids days of thigh cyclophosphamide and we tried to reverse this the these these dilemmas and the drugs worked actually to a great extent so we could usually suppress the immune system in lupus we could reverse patient's kidney failure or their transplant rejection the problem was we did it by what I would call blanket immunosuppression so we suppress the immune system pretty much in its entirety and that meant the patient's ain't got horrible infections because their immune system couldn't do the job it was meant to do and they got virus infections and bacterial infections and sometimes they died of those infections so we needed new drugs we needed new concepts in in in immunology to really treat immune disorders and because of this I was introduced with one to one of my great mentors Hermann Waldman who was working in Cambridge and Hermann with other people around the world working on a concept called immune reprogramming or immune reaction and this was a real a really neat idea and like many great ideas it was relatively simple the immune system itself is very complex so and one of the reasons is it's everywhere it's in your blood it's in your lymph glands it's in your spleen it's in the lining of your bowel it's in the lining of your lung it's in your skin it's absolutely everywhere so it's a really hard organ to work with but what the immune reprogram ins were doing they were saying well the immune system is actually quite straightforward it's a collection of cells but they're coordinated like any army by one particular cell so this is meant to be a joint here in the middle of the picture so you may not want to come up to me as a Rheumatologist if you think this is what I think the joint looks like but that's where joint looks like and and the immune system is coordinated by these cells called helper t-cells which I call the generals of the immune system and they really instruct the rest of the immune system what to do the B cells or cytotoxic T cells and macrophages and here they are destroying a joint in in a situation a little bit like rheumatoid arthritis and what the immune read programmers were saying was well if we could develop drugs which targeted those helper T cells and told me if you'd like to change their minds and to switch off then everything else should follow and there are some really remarkable things going on in the labs at the time so you could cure animals of lupus you could actually cure them with just a couple of weeks of treatment with drugs called monoclonal antibodies which targeted these helper T cells you could take an animal that was rejecting a transplant and not only stop the transplant rejection but make the immune system chain it's mine so that it started to believe the transplant was self so after two or three weeks of treatment it no longer rejected and that animal would live forever with a foreign organ I found this really remarkable and so this was in a sense the first part of my journey I'd found an area that I wanted to develop I was interested in pharmacology I wanted to work with drugs but I wanted to work with new drugs something very very different and I thought this was it I suppose the problem was that this is all at the stage this was all in animals and and laboratory models nothing had gone into patients yet and this is where the patient that changed my life comes into it so I was working in kidney medicine I'd gone to Cambridge to work with Herman Waldman actually to do my PhD and I was working as another inspirational mentor called Martin Lockwood he was one of the kidney doctors in came we had worked with him in London and we both moved to Cambridge together and I went on a ward round with him one day and I met a patient called Nicola who that stage is about a 1920 and Sheba needle for many many years with an immune disease we didn't really understand we didn't know what it was he'd been very very sick she'd had all the drugs really known to man in terms of immune suppression on their own and in combinations and she wasn't doing very well and in fact the first time I saw her she was unconscious she was on so many painkillers that she really was doing very badly indeed and I'm going to show you a couple of video clips now one of niccola's mum and that's been anonymized funiculars mum's personal choice and then one of Nicola so let's listen to mrs. month first this was a few years ago had she been in hospital at that stage - she been in for I think almost nine months continues over yeah because every time she got ready to go home she was poorly again what was it it was just written under the repairable change swelling joints temperatures just generally really really unwell you could never pinpoint anything it was just a mass of symptoms which couldn't be explained they didn't fall into any particular box okay and that's Mick his mum and his Nicola as well this was again taken a few years back so you got tempos yeah how did that go durably infusions oh no because at that time I is I teach a crisis point really and apparently they called mom and dad him to tell them that I wasn't going to make it and that's when dr. Lockwood came up and asked them if he could could give me campus for the first time so I don't remember having it but all I do remember is all of a sudden you know waking up and things were very different and what had changed I could move and I just felt different I hadn't got the level of pain that I'd had before and it was quite confusing to go from being unable to move and being in that level of pain to all of a sudden waking up and not having that yeah so for me that was a lightbulb moment really Nick Toth had failed on all these conventional immunosuppressive drugs and suddenly there was a very specific drug that had really saved her life and and it hadn't cured her as you'll see but but it had made a huge difference and I thought well actually this is what I want to do I want to be the problem for me I suppose is did I want to hang my whole career on a very very rare patient in a unique situation and and that was difficult I spoke to a few people I said well you need to be careful because you know fortunately patients like Nicola rare you don't see patients like this every day and so if you want to develop a new sort of treatment maybe you should be looking at other sorts of disease area so I went back to the books I went back to my medical school books and thought well where do I think the immune system is doing most damage in terms of patients and I came across another disease which I thought was immune mediated it wasn't completely clear at the time it didn't kill people in the same way as vasculitis which Nicola probably had but it took away their lives it stopped them working it took away their social lives it made them dependent on others often and there weren't any treatments and that that disease was rheumatoid arthritis so I started doing Rheumatology clinics in Cambridge with with another mentor Brian hazel Minh and when I think back 25 years not that long ago I would say one in three patients will turn up to click in the wheelchair most of them are lost their jobs did a few months of the illness starting lost their social lives many of them are dependent on their relatives to look after and they couldn't shop they couldn't do very much and there weren't many drugs there were three or four drugs which we would cycle through and usually by five years into the disease we got to the end and there wasn't much else out there for those patients so I spoke to Hermann Waldman I said why don't we try can path in rheumatoid arthritis I'm not sure it's an immune disease in the canoe that sort of sense but I think it's worth a shot and now I'm going to show you a video of one of the very first patients that we treat with camp path and as you'll see this was taken 25 years ago Jenny these are your thermography images from today and I think we can see at least two big differences since before treatment the first is that before there is a lot of red on the image and as you remember red means hot and particularly around the wrists and the fingers today if you look at today's image they're still slightly yellow in those areas but there really is a considerable change so Jenny to these thermography changes correspond with how we are feeling now oh yes it's made a tremendous difference the swelling has all gone down and a wide range of movements in my fingers but I can do all sorts of things that I couldn't do before I had the treatment what sorts of things are you able to do now well I can manage to cope with my hair and put my makeup on and been able to carry on with my sugar card so 25 years ago and that was kind of the end of my first story I'd found the area of research I wanted to be involved in I'd found the disease it was going to occupy me for the last of next 25 years and that's really what I've been doing since is developing immune therapies for rheumatoid but I told the second part of the story was about you and and how you can make a big difference and maybe it won't be you I'm talking really about patients in general and yes campus was a good treatment for Jenny it did a lot of things for Nicola it wasn't the answer so when I do a Rheumatology clinic now and I see what arthritis patients we have four of these immune targeted therapies only one of them is a little bit like campus but there has been a revolution in drugs that target the immune system and many of my patients now most of us still enjoy in work most and don't lose their jobs most of them have a social life some of them have no symptoms at all and some of them we can even stop their drugs so there have been huge advances but one of the nice things about the human race is that were all very different and if you look around the room everybody he's different there's no identical twins I hope but apart from that we're different people and what that means is when you get sick you behave differently your illness behaves differently and so for every five or six patients I see in my clinic who are doing really well there will still be one or two who are doing really badly despite all these modern treatments they'll still cycle through them and sadly they just don't respond and we don't understand that still so when I'm sitting in my clinic room it's one of those patients says two things going through my mind really one is the doctor in me thinking what treatment can I use for this patient is there anything I've missed out is there any combination I should be using what can I do to get this patient better there's got to be something that's the first thing the second thing is well why are they different what what's different about this patient what's different about their disease have I got the diagnosis right but if I have why are they not responding to these treatments which most of my patients do respond to and I think what the patient doesn't realize is they are the owner of an incredibly precious resource a huge doofus precious resource I work in a field called translational medicine which we sometimes call bench to bedside research and what I need is to understand how that patients or bodies is working their joints are working so I needs samples from the patients I need ideas from the patient so in you know in simplest terms a little bit of extra blood will help my research a bit more complicated we can take some fluid from their joints or some joint lining or they could just tell me what they're feeling and I feel that every patient that walks through the door of my clinic has something to help something to add and I don't really think patients understand that and they don't understand that because I don't think the general population understands that before they become patients and that's what I call a translational partnership I really believe if we're going to cure a disease like rheumatoid arthritis patients and researchers have to work together as partners on our voyage to discovery to better understand these diseases I talked about the immune army I guess what I'm talking about here is an army of patients and researchers working together to fight those diseases and you know in the word of our political partners we can do that better together so I talk about the general public what I would like is when patients come to the clinic really for the first time so really you need to understand this as a member of the general public before you become a patient if you're going to become a patient I want you to understand that actually you have loads to offer in terms of research we work very well in partnerships in terms of the clinics and nurses and doctors working together but this is about patients working with doctors and scientists and I want you to come to my clinic engaged and excited and understanding our journey understanding how you could help and as I say that might be just giving a little bit of extra blood it might be giving a bit of your joint tissue which actually is a pretty painless procedure these days you have to believe me on that one but it is oh it may just be filling in a questionnaire but I'd like to think that everybody that walks through the door of my clinic recognizes that they are a challenge to me to medical research and actually they can really help in a very very big way in in in progressing in in medical progress and that's that's my concept of this translational partnership which we're trying to develop in Newcastle right now with initiatives so I hope you'll see this in in months and years to come so that's my second story that's how you particular if you become patients can help but actually we need the general public to help as well because of course before you become ill there are things you can do as well and and you will have heard of initiatives like biobank where where your your questions and your samples can help but what about Nicola well can path wasn't the answer I mean I think it did change her life I think I think it did save her life probably and she's gone on over the years to receive many more in military sadly she wasn't cured and she still had many problems in years to come but if you really want to understand the clue I'm very grateful for her because she's come here today and she's sitting over here in the front we're at the edge and she's agreed to talk to people over coffee if you'd like to hear her story here about some of the drugs that she's received so I just want to say to Nicola actually thank you very much as you probably realize your story did change in my life and I hope I change your life thank you very much

Channel: TEDx Talks

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Keywords: ted x, tedx talk, ted talk, English, tedx talks, Health, TEDxTalks, ted, United Kingdom, Science (hard), ted talks, tedx, Medicine

Id: AX2dTbi_nWg

Length: 15min 49sec (949 seconds)

Published: Thu Jul 03 2014