Description
We're going to be hearing from Linda and Tamás, who've both got very different stories to tell. But as you'll hear throughout their discussion, there are some parallels that can be drawn. Both are working as part of Servier's patient engagement program. They share their views about the value of incorporate patients' insights in medical research.
Hosted by Ausha. See ausha.co/privacy-policy for more information.
Transcription
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Hello and welcome to Paris-Saclay for this episode of the Patient's Side of the Story, a series of podcasts which came about thanks to the close collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. This board works with the Servier teams to try to make sure patients'perspectives are taken into consideration at the new Servier R&D Institute at Paris Saclay. These podcasts are a big part of that, listening carefully to patients who have been really kind sharing their personal experiences with us. Today we're going to be hearing from Linda and Tamás, who've both got very different stories to tell, but as you'll hear throughout their discussion, there are some parallels that can be drawn. Linda and Tamás, thank you very much indeed for joining us. Linda, let me start with you. Could you just introduce yourself and tell us about your condition?
My name is Linda Stone. I have to give my age away. Let's just say I'm retired from paid employment now. A mum of two, a grandmother of three. And I was diagnosed with Sjögren's more than 30 years ago. I was very fortunate that I never considered that it defined me, I co-existed with it, until about 18 months ago when some further symptoms emerged, which meant that I can't ignore it anymore to the extent that I was able to before. And Sjögren's is a chronic systemic autoimmune disease that can attack any organ system in the body, but typically manifests with dry eyes, dry mouth and fatigue. Although I was lucky and didn't suffer from the fatigue until more recently.
Thanks for that Linda. Tamás, can I put the same question to you?
Of course. So my name is Tamás Gretzky. I originally come from Hungary, so I have this difficult name, but I've been living in Germany for quite a number of years now. I'm an HIV patient, so I was diagnosed with HIV, with AIDS at the time 20 years ago and I also live with major depression. So these are the two conditions that I have been struggling with initially and now living with rather and I'm happy to talk about the difference of these two concepts. I'm 56 years of age and I'm a father of one and a grandfather of one. And I have been... working as a patient advocate for many years, some 18, 17, 18 years now. I'm a linguist, I'm a psychologist, and I'm also a researcher in social sciences. And my research field is patient advocacy and patient involvement. So I do both practical stuff, but also a little bit of theory.
I think that's interesting because you haven't taken a much more professional approach to the advocacy you do. Whereas I ended up doing it because there was nobody else doing it. And although I have a background as a pharmacist, I have had no formal training in advocacy, but you end up doing what you can do for patients and for yourself.
You're right, Linda. But also, I must admit that initially, when I got into patient advocacy, that was exactly the same situation because at the time in Hungary, 20 years ago, there was so little information available about HIV and what it meant to live with HIV, what the prognosis was how you could cope with this disease. And of course, stigma was much higher. It's still high, but it was much higher at the time, both in the healthcare system and also outside in general society. So initially I started my work very much out of this need for informing people and gathering information, distributing relevant information within the community or communities of especially gay people, gay men in Hungary at the time. And then it grew over time, this work into that professional aspect that you refer to. But in fact, I realized back 18 years ago that there's a huge need, there was a huge need for this type of information, because there was literally nothing in my native language, in Hungarian. I mean, materials were available in German, in English, in French, maybe Spanish, but not in Hungarian. So there was a dire need.
And there's a parallel there as well, because when I was first diagnosed, I was told, "Oh, don't worry about it. You won't get any joint permanent joint damage." because I presented having seized up completely from shoulder to fingertip on both arms. And just dry eyes, dry mouth sent away with drops that were totally ineffective. Thank God we have better drops now. And now we know that it is a serious systemic disease. And people suffer much more from Sjögren's than I think the consultants realised then. And I think it's really, so it's not that different. It's trying to get the information out to people. I look well. I might have sore eyes usually, masked with makeup at the start of the day and going redder and redder as the day goes on. But you look reasonably well and people don't recognise you're ill. And when you have the systemic manifestations, it's even worse. Because I'm... it's now hit my lungs. Probably hit other things earlier on when I didn't realise that was an issue. Probably hit my reproductive system. Before I even knew I had Sjögren's, hit my digestive system and it's now hit my lungs. And I have to be really, really careful where I go, avoid cigarettes, avoid animals, you know, lots of things that could adversely impact my lungs and make them worse. So, I mean, that is a real issue that nobody could warn you about 30 years ago. They knew about the possibility of a mild lymphoma, which thankfully I don't have, but that was about the only one that they knew about earlier.
Linda, you were diagnosed 30 years ago, Tamás 20 years ago. I'm assuming that post-diagnosis, you both had lots of anxiety and lots of questions. Tamás, firstly to you, does that fear gradually subside as time goes by?
I think anxiety and fear are part of the package, but they do subside over time. And there are certain strategies, coping strategies that will help you. with these parts of the package. And I think that what really helps is if you reach out to people, if you reach out to others and seek support, seek advice, seek company so that you're not isolated and you don't end up completely alone with your illness or illnesses.
And Linda, did you feel well guided throughout the process leading up to diagnosis? And did you also feel that sense of anxiety like Tamás did?
I was relieved to be diagnosed. I was so relieved to be diagnosed and I know I was lucky I was diagnosed relatively quickly because we hear of patients who it's taken years to get a diagnosis. I was diagnosed within about three months. And once I was diagnosed, the relief was so great, I think that overwhelmed a lot of the concern and anxiety at that stage. I didn't have time to be anxious. I had two young children. I was the president of the Royal Pharmaceutical Society of Great Britain at the time, which was both the regulator and the professional governing body for more than 40,000, nearly 50,000 pharmacists. So I didn't have time to be anxious then. What has been a source of great anxiety has been what's happened to me in the last 18 months. And I live, if I can say, I feel as if I live sometimes on a time bomb. Has the person next to me in the cinema or the theatre, have they got a cold or on the train or the bus? Am I going to catch it from them? Am I going to end up then with an exacerbation of the pulmonary fibrosis that I now have? I end up in intensive care, come out on oxygen, and I know how pulmonary fibrosis goes, which is not very pleasant. So how long can I fend it off for? I don't know. So there is an underlying level of anxiety at the moment that I still haven't come to terms with. I managed the original diagnosis just about 15 months ago with the usual going through. the stages of grief almost, but going through them fairly quickly and trying to find a way of coping. And my coping mechanism is to find things to do, have plans for the future that we hope we will be able to achieve. So we have the bucket list trip planned for this autumn. We'd hoped to go in February, but couldn't. So we're going in November. Hope we manage it. Because I know I only have one chance to do it. So that's the sort of thing that we've tried to do. Make plans to do things with the family, spend time with the family, and for my husband and I to go to the theatre and so on, and do things like that. So that's the way I... have tried to manage the impact of this latest diagnosis on me.
And Tamás, clearly no two cases are ever the same. So it's valuable, isn't it, that people in the medical profession, doctors, researchers and so on, really do listen to patients and hear about their realities directly from them.
I think it's important to see that all of us go through very different, what people call this journey, I don't like the word "journey", like, you know, the patient journey. It's not a pleasant journey. It's also not something of choice. It's something that happens to you, that's thrown at you by life. But people go through very different trajectories. So that's why I think it's important that... that whoever works in research and development or even pharmaceutical marketing, that they actually listen to the patients and listen to all these different experiences and these different coping strategies. So I think that this diversity, this multitude of experiences is something that's tremendously important and also useful for the development and research and for the marketing processes. Because once you consider those, once you acknowledge the importance of these, you can also be more successful in your own work. Because you can generate products, you can develop products that speak more to the people rather than to abstract scientific objectives or second-hand experiences described by researchers or described by clinicians. So I find it very, very valuable to listen to my peers like Linda and many others and trying to understand what is it that we can learn from that experience rather than just taking a generic approach to, you know, like, this is what it means to live with a disease because it's different for all of us. I think the bottom line is that there is this diversity of the experience which needs to be heard.
And Linda, clearly medical professionals do need to listen to patients, as we've been saying. But what about talking to family and friends? How did you go about telling them?
I have a few very close friends who are very supportive and a wonderfully supportive family. I have other people I don't tell, or I didn't tell, because I didn't want to tell them while there was nothing for them to see and know about. I had a lot of pressure that I should tell my brother and my sister-in-law and my nieces and so on, that I should tell the wider family. I wasn't ready to. And I think I've since seen something, and I think it's been published by Sue Ryder, the Sue Ryder Foundation, if you know that, Tom. And it says : "You do not have to tell anybody until you're ready to tell them." but it so resonated with me. And I think that's something that really we could give. Nobody can tell you when it's time to tell somebody else about something wrong.
Thanks, Linda. That sounds like really valuable advice. And as you've both been saying, you're involved in patient advocacy and engagement. You're both members of the Servier Patient Board. Tamás, what does that actually involve in your case?
Most of us start in this very typical way like Linda or I did, by trying to help other people. And helping other people also helps yourself. And that's well documented in the literature and doesn't really need to be explained a lot. But at the same time, there are some other important aspects to what patient advocates do, such as contributing to science, contributing to research and development through systematically gathering and also generating, if needed, evidence from patient communities. So what we do a lot of times, And that's common practice is telling our stories. This is what we do here today as well. But actually, if you look at all these different stories from many people, then there's also an opportunity to organize that experience into evidence. So to generate evidence from anecdotes, which is an important step, that's something that patient advocates and patient groups or patient advocacy groups have been doing. actually very well for the last, I would say, seven, even ten years. So this contribution to science is another very important aspect of patient advocacy.
Linda, what are your reasons for getting involved with patient advocacy and why is this activity important to you?
I become involved in this sort of work, both for this company and for others and other research projects, because there is no cure for Sjogren's. There is nothing that stops the disease, let alone reverses it. All there is is symptom relief. So the hope that somebody at some point will come up with something that helps Sjögren's patients is what motivates me. It probably will be too late to help me but it will help others. And in the awful thought that any of my family might suffer from it, it will help them. I mean, this is the issue with rare diseases. Often there are no treatments. So that is what motivates me. What's my experience? I was involved with pharmaceutical industry at a very senior level in some of my work with the Prescription Medicines Code of Practice Authority in the UK. And so I think that's one of the reasons I'm fairly comfortable in doing it and speaking out and occasionally being accused of being a bit bolshie, because I will speak out. I'm not frightened to speak out. And yes, the work is rewarding, but it can be difficult and it can be challenging. and there is good pharmaceutical industry and bad pharmaceutical industry from the point of view of the patient. And an example I've given before is if they really try and understand the disease before they start asking you to help them with trials and so on, that means they understand what they're doing. if they come along and ask you for help when they're already going into a phase three trial or a late stage phase two trial, quite frankly, that's a bit too late to be saying, you need to have sorted out your patient outcomes. And so I've encountered both without naming any names.
And Tamás, before we finish, for someone listening who can relate to a lot of what you've been through, what's your parting golden nuggets of advice?
Never give up. That's I think the most important piece of advice. There's life with illness. And it will never be the same. It will never be like old times. It's unlikely that you can go back to where you were before your diagnosis. But that doesn't mean that that's a worse life than before. For many of us, as you also heard from Linda, getting a diagnosis can be a relief because then you know what's going on. Your problems have a name and that can be a relief. And there's always others. There are always people that you can... that you can reach out to. And there will always be hands that are there to hold. That's the most important learning for me from the last almost two decades of this type of work.
And Linda, could I ask you for a parting word of advice for someone who's listening?
Take a deep breath and make the best out of the life that you have got. Particularly if it's a progressive disease, it's only going to get worse. And you will regret what you don't do if you don't at least try. So that's the one message. And my message to other people is to say somebody may look well on the outside, but you don't know what they're dealing with inside. It might not be out and out depression and mental health issues in the way Thomas has explained, but they could be under extreme stress from what they're going through. So just remember that. We don't know what's going on inside.
Okay, well, that's all we've got time for. Thank you very much indeed to you both, Linda and Tamás. Thank you for being so generous with your time and for sharing those personal experiences.
And thank you, Tom.
Thank you.
We wish you the very best. Thank you to you as well for listening. We hope to have you with us again very soon for the next edition of the Patient's Side of the Story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Description
We're going to be hearing from Linda and Tamás, who've both got very different stories to tell. But as you'll hear throughout their discussion, there are some parallels that can be drawn. Both are working as part of Servier's patient engagement program. They share their views about the value of incorporate patients' insights in medical research.
Hosted by Ausha. See ausha.co/privacy-policy for more information.
Transcription
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Hello and welcome to Paris-Saclay for this episode of the Patient's Side of the Story, a series of podcasts which came about thanks to the close collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. This board works with the Servier teams to try to make sure patients'perspectives are taken into consideration at the new Servier R&D Institute at Paris Saclay. These podcasts are a big part of that, listening carefully to patients who have been really kind sharing their personal experiences with us. Today we're going to be hearing from Linda and Tamás, who've both got very different stories to tell, but as you'll hear throughout their discussion, there are some parallels that can be drawn. Linda and Tamás, thank you very much indeed for joining us. Linda, let me start with you. Could you just introduce yourself and tell us about your condition?
My name is Linda Stone. I have to give my age away. Let's just say I'm retired from paid employment now. A mum of two, a grandmother of three. And I was diagnosed with Sjögren's more than 30 years ago. I was very fortunate that I never considered that it defined me, I co-existed with it, until about 18 months ago when some further symptoms emerged, which meant that I can't ignore it anymore to the extent that I was able to before. And Sjögren's is a chronic systemic autoimmune disease that can attack any organ system in the body, but typically manifests with dry eyes, dry mouth and fatigue. Although I was lucky and didn't suffer from the fatigue until more recently.
Thanks for that Linda. Tamás, can I put the same question to you?
Of course. So my name is Tamás Gretzky. I originally come from Hungary, so I have this difficult name, but I've been living in Germany for quite a number of years now. I'm an HIV patient, so I was diagnosed with HIV, with AIDS at the time 20 years ago and I also live with major depression. So these are the two conditions that I have been struggling with initially and now living with rather and I'm happy to talk about the difference of these two concepts. I'm 56 years of age and I'm a father of one and a grandfather of one. And I have been... working as a patient advocate for many years, some 18, 17, 18 years now. I'm a linguist, I'm a psychologist, and I'm also a researcher in social sciences. And my research field is patient advocacy and patient involvement. So I do both practical stuff, but also a little bit of theory.
I think that's interesting because you haven't taken a much more professional approach to the advocacy you do. Whereas I ended up doing it because there was nobody else doing it. And although I have a background as a pharmacist, I have had no formal training in advocacy, but you end up doing what you can do for patients and for yourself.
You're right, Linda. But also, I must admit that initially, when I got into patient advocacy, that was exactly the same situation because at the time in Hungary, 20 years ago, there was so little information available about HIV and what it meant to live with HIV, what the prognosis was how you could cope with this disease. And of course, stigma was much higher. It's still high, but it was much higher at the time, both in the healthcare system and also outside in general society. So initially I started my work very much out of this need for informing people and gathering information, distributing relevant information within the community or communities of especially gay people, gay men in Hungary at the time. And then it grew over time, this work into that professional aspect that you refer to. But in fact, I realized back 18 years ago that there's a huge need, there was a huge need for this type of information, because there was literally nothing in my native language, in Hungarian. I mean, materials were available in German, in English, in French, maybe Spanish, but not in Hungarian. So there was a dire need.
And there's a parallel there as well, because when I was first diagnosed, I was told, "Oh, don't worry about it. You won't get any joint permanent joint damage." because I presented having seized up completely from shoulder to fingertip on both arms. And just dry eyes, dry mouth sent away with drops that were totally ineffective. Thank God we have better drops now. And now we know that it is a serious systemic disease. And people suffer much more from Sjögren's than I think the consultants realised then. And I think it's really, so it's not that different. It's trying to get the information out to people. I look well. I might have sore eyes usually, masked with makeup at the start of the day and going redder and redder as the day goes on. But you look reasonably well and people don't recognise you're ill. And when you have the systemic manifestations, it's even worse. Because I'm... it's now hit my lungs. Probably hit other things earlier on when I didn't realise that was an issue. Probably hit my reproductive system. Before I even knew I had Sjögren's, hit my digestive system and it's now hit my lungs. And I have to be really, really careful where I go, avoid cigarettes, avoid animals, you know, lots of things that could adversely impact my lungs and make them worse. So, I mean, that is a real issue that nobody could warn you about 30 years ago. They knew about the possibility of a mild lymphoma, which thankfully I don't have, but that was about the only one that they knew about earlier.
Linda, you were diagnosed 30 years ago, Tamás 20 years ago. I'm assuming that post-diagnosis, you both had lots of anxiety and lots of questions. Tamás, firstly to you, does that fear gradually subside as time goes by?
I think anxiety and fear are part of the package, but they do subside over time. And there are certain strategies, coping strategies that will help you. with these parts of the package. And I think that what really helps is if you reach out to people, if you reach out to others and seek support, seek advice, seek company so that you're not isolated and you don't end up completely alone with your illness or illnesses.
And Linda, did you feel well guided throughout the process leading up to diagnosis? And did you also feel that sense of anxiety like Tamás did?
I was relieved to be diagnosed. I was so relieved to be diagnosed and I know I was lucky I was diagnosed relatively quickly because we hear of patients who it's taken years to get a diagnosis. I was diagnosed within about three months. And once I was diagnosed, the relief was so great, I think that overwhelmed a lot of the concern and anxiety at that stage. I didn't have time to be anxious. I had two young children. I was the president of the Royal Pharmaceutical Society of Great Britain at the time, which was both the regulator and the professional governing body for more than 40,000, nearly 50,000 pharmacists. So I didn't have time to be anxious then. What has been a source of great anxiety has been what's happened to me in the last 18 months. And I live, if I can say, I feel as if I live sometimes on a time bomb. Has the person next to me in the cinema or the theatre, have they got a cold or on the train or the bus? Am I going to catch it from them? Am I going to end up then with an exacerbation of the pulmonary fibrosis that I now have? I end up in intensive care, come out on oxygen, and I know how pulmonary fibrosis goes, which is not very pleasant. So how long can I fend it off for? I don't know. So there is an underlying level of anxiety at the moment that I still haven't come to terms with. I managed the original diagnosis just about 15 months ago with the usual going through. the stages of grief almost, but going through them fairly quickly and trying to find a way of coping. And my coping mechanism is to find things to do, have plans for the future that we hope we will be able to achieve. So we have the bucket list trip planned for this autumn. We'd hoped to go in February, but couldn't. So we're going in November. Hope we manage it. Because I know I only have one chance to do it. So that's the sort of thing that we've tried to do. Make plans to do things with the family, spend time with the family, and for my husband and I to go to the theatre and so on, and do things like that. So that's the way I... have tried to manage the impact of this latest diagnosis on me.
And Tamás, clearly no two cases are ever the same. So it's valuable, isn't it, that people in the medical profession, doctors, researchers and so on, really do listen to patients and hear about their realities directly from them.
I think it's important to see that all of us go through very different, what people call this journey, I don't like the word "journey", like, you know, the patient journey. It's not a pleasant journey. It's also not something of choice. It's something that happens to you, that's thrown at you by life. But people go through very different trajectories. So that's why I think it's important that... that whoever works in research and development or even pharmaceutical marketing, that they actually listen to the patients and listen to all these different experiences and these different coping strategies. So I think that this diversity, this multitude of experiences is something that's tremendously important and also useful for the development and research and for the marketing processes. Because once you consider those, once you acknowledge the importance of these, you can also be more successful in your own work. Because you can generate products, you can develop products that speak more to the people rather than to abstract scientific objectives or second-hand experiences described by researchers or described by clinicians. So I find it very, very valuable to listen to my peers like Linda and many others and trying to understand what is it that we can learn from that experience rather than just taking a generic approach to, you know, like, this is what it means to live with a disease because it's different for all of us. I think the bottom line is that there is this diversity of the experience which needs to be heard.
And Linda, clearly medical professionals do need to listen to patients, as we've been saying. But what about talking to family and friends? How did you go about telling them?
I have a few very close friends who are very supportive and a wonderfully supportive family. I have other people I don't tell, or I didn't tell, because I didn't want to tell them while there was nothing for them to see and know about. I had a lot of pressure that I should tell my brother and my sister-in-law and my nieces and so on, that I should tell the wider family. I wasn't ready to. And I think I've since seen something, and I think it's been published by Sue Ryder, the Sue Ryder Foundation, if you know that, Tom. And it says : "You do not have to tell anybody until you're ready to tell them." but it so resonated with me. And I think that's something that really we could give. Nobody can tell you when it's time to tell somebody else about something wrong.
Thanks, Linda. That sounds like really valuable advice. And as you've both been saying, you're involved in patient advocacy and engagement. You're both members of the Servier Patient Board. Tamás, what does that actually involve in your case?
Most of us start in this very typical way like Linda or I did, by trying to help other people. And helping other people also helps yourself. And that's well documented in the literature and doesn't really need to be explained a lot. But at the same time, there are some other important aspects to what patient advocates do, such as contributing to science, contributing to research and development through systematically gathering and also generating, if needed, evidence from patient communities. So what we do a lot of times, And that's common practice is telling our stories. This is what we do here today as well. But actually, if you look at all these different stories from many people, then there's also an opportunity to organize that experience into evidence. So to generate evidence from anecdotes, which is an important step, that's something that patient advocates and patient groups or patient advocacy groups have been doing. actually very well for the last, I would say, seven, even ten years. So this contribution to science is another very important aspect of patient advocacy.
Linda, what are your reasons for getting involved with patient advocacy and why is this activity important to you?
I become involved in this sort of work, both for this company and for others and other research projects, because there is no cure for Sjogren's. There is nothing that stops the disease, let alone reverses it. All there is is symptom relief. So the hope that somebody at some point will come up with something that helps Sjögren's patients is what motivates me. It probably will be too late to help me but it will help others. And in the awful thought that any of my family might suffer from it, it will help them. I mean, this is the issue with rare diseases. Often there are no treatments. So that is what motivates me. What's my experience? I was involved with pharmaceutical industry at a very senior level in some of my work with the Prescription Medicines Code of Practice Authority in the UK. And so I think that's one of the reasons I'm fairly comfortable in doing it and speaking out and occasionally being accused of being a bit bolshie, because I will speak out. I'm not frightened to speak out. And yes, the work is rewarding, but it can be difficult and it can be challenging. and there is good pharmaceutical industry and bad pharmaceutical industry from the point of view of the patient. And an example I've given before is if they really try and understand the disease before they start asking you to help them with trials and so on, that means they understand what they're doing. if they come along and ask you for help when they're already going into a phase three trial or a late stage phase two trial, quite frankly, that's a bit too late to be saying, you need to have sorted out your patient outcomes. And so I've encountered both without naming any names.
And Tamás, before we finish, for someone listening who can relate to a lot of what you've been through, what's your parting golden nuggets of advice?
Never give up. That's I think the most important piece of advice. There's life with illness. And it will never be the same. It will never be like old times. It's unlikely that you can go back to where you were before your diagnosis. But that doesn't mean that that's a worse life than before. For many of us, as you also heard from Linda, getting a diagnosis can be a relief because then you know what's going on. Your problems have a name and that can be a relief. And there's always others. There are always people that you can... that you can reach out to. And there will always be hands that are there to hold. That's the most important learning for me from the last almost two decades of this type of work.
And Linda, could I ask you for a parting word of advice for someone who's listening?
Take a deep breath and make the best out of the life that you have got. Particularly if it's a progressive disease, it's only going to get worse. And you will regret what you don't do if you don't at least try. So that's the one message. And my message to other people is to say somebody may look well on the outside, but you don't know what they're dealing with inside. It might not be out and out depression and mental health issues in the way Thomas has explained, but they could be under extreme stress from what they're going through. So just remember that. We don't know what's going on inside.
Okay, well, that's all we've got time for. Thank you very much indeed to you both, Linda and Tamás. Thank you for being so generous with your time and for sharing those personal experiences.
And thank you, Tom.
Thank you.
We wish you the very best. Thank you to you as well for listening. We hope to have you with us again very soon for the next edition of the Patient's Side of the Story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
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Description
We're going to be hearing from Linda and Tamás, who've both got very different stories to tell. But as you'll hear throughout their discussion, there are some parallels that can be drawn. Both are working as part of Servier's patient engagement program. They share their views about the value of incorporate patients' insights in medical research.
Hosted by Ausha. See ausha.co/privacy-policy for more information.
Transcription
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Hello and welcome to Paris-Saclay for this episode of the Patient's Side of the Story, a series of podcasts which came about thanks to the close collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. This board works with the Servier teams to try to make sure patients'perspectives are taken into consideration at the new Servier R&D Institute at Paris Saclay. These podcasts are a big part of that, listening carefully to patients who have been really kind sharing their personal experiences with us. Today we're going to be hearing from Linda and Tamás, who've both got very different stories to tell, but as you'll hear throughout their discussion, there are some parallels that can be drawn. Linda and Tamás, thank you very much indeed for joining us. Linda, let me start with you. Could you just introduce yourself and tell us about your condition?
My name is Linda Stone. I have to give my age away. Let's just say I'm retired from paid employment now. A mum of two, a grandmother of three. And I was diagnosed with Sjögren's more than 30 years ago. I was very fortunate that I never considered that it defined me, I co-existed with it, until about 18 months ago when some further symptoms emerged, which meant that I can't ignore it anymore to the extent that I was able to before. And Sjögren's is a chronic systemic autoimmune disease that can attack any organ system in the body, but typically manifests with dry eyes, dry mouth and fatigue. Although I was lucky and didn't suffer from the fatigue until more recently.
Thanks for that Linda. Tamás, can I put the same question to you?
Of course. So my name is Tamás Gretzky. I originally come from Hungary, so I have this difficult name, but I've been living in Germany for quite a number of years now. I'm an HIV patient, so I was diagnosed with HIV, with AIDS at the time 20 years ago and I also live with major depression. So these are the two conditions that I have been struggling with initially and now living with rather and I'm happy to talk about the difference of these two concepts. I'm 56 years of age and I'm a father of one and a grandfather of one. And I have been... working as a patient advocate for many years, some 18, 17, 18 years now. I'm a linguist, I'm a psychologist, and I'm also a researcher in social sciences. And my research field is patient advocacy and patient involvement. So I do both practical stuff, but also a little bit of theory.
I think that's interesting because you haven't taken a much more professional approach to the advocacy you do. Whereas I ended up doing it because there was nobody else doing it. And although I have a background as a pharmacist, I have had no formal training in advocacy, but you end up doing what you can do for patients and for yourself.
You're right, Linda. But also, I must admit that initially, when I got into patient advocacy, that was exactly the same situation because at the time in Hungary, 20 years ago, there was so little information available about HIV and what it meant to live with HIV, what the prognosis was how you could cope with this disease. And of course, stigma was much higher. It's still high, but it was much higher at the time, both in the healthcare system and also outside in general society. So initially I started my work very much out of this need for informing people and gathering information, distributing relevant information within the community or communities of especially gay people, gay men in Hungary at the time. And then it grew over time, this work into that professional aspect that you refer to. But in fact, I realized back 18 years ago that there's a huge need, there was a huge need for this type of information, because there was literally nothing in my native language, in Hungarian. I mean, materials were available in German, in English, in French, maybe Spanish, but not in Hungarian. So there was a dire need.
And there's a parallel there as well, because when I was first diagnosed, I was told, "Oh, don't worry about it. You won't get any joint permanent joint damage." because I presented having seized up completely from shoulder to fingertip on both arms. And just dry eyes, dry mouth sent away with drops that were totally ineffective. Thank God we have better drops now. And now we know that it is a serious systemic disease. And people suffer much more from Sjögren's than I think the consultants realised then. And I think it's really, so it's not that different. It's trying to get the information out to people. I look well. I might have sore eyes usually, masked with makeup at the start of the day and going redder and redder as the day goes on. But you look reasonably well and people don't recognise you're ill. And when you have the systemic manifestations, it's even worse. Because I'm... it's now hit my lungs. Probably hit other things earlier on when I didn't realise that was an issue. Probably hit my reproductive system. Before I even knew I had Sjögren's, hit my digestive system and it's now hit my lungs. And I have to be really, really careful where I go, avoid cigarettes, avoid animals, you know, lots of things that could adversely impact my lungs and make them worse. So, I mean, that is a real issue that nobody could warn you about 30 years ago. They knew about the possibility of a mild lymphoma, which thankfully I don't have, but that was about the only one that they knew about earlier.
Linda, you were diagnosed 30 years ago, Tamás 20 years ago. I'm assuming that post-diagnosis, you both had lots of anxiety and lots of questions. Tamás, firstly to you, does that fear gradually subside as time goes by?
I think anxiety and fear are part of the package, but they do subside over time. And there are certain strategies, coping strategies that will help you. with these parts of the package. And I think that what really helps is if you reach out to people, if you reach out to others and seek support, seek advice, seek company so that you're not isolated and you don't end up completely alone with your illness or illnesses.
And Linda, did you feel well guided throughout the process leading up to diagnosis? And did you also feel that sense of anxiety like Tamás did?
I was relieved to be diagnosed. I was so relieved to be diagnosed and I know I was lucky I was diagnosed relatively quickly because we hear of patients who it's taken years to get a diagnosis. I was diagnosed within about three months. And once I was diagnosed, the relief was so great, I think that overwhelmed a lot of the concern and anxiety at that stage. I didn't have time to be anxious. I had two young children. I was the president of the Royal Pharmaceutical Society of Great Britain at the time, which was both the regulator and the professional governing body for more than 40,000, nearly 50,000 pharmacists. So I didn't have time to be anxious then. What has been a source of great anxiety has been what's happened to me in the last 18 months. And I live, if I can say, I feel as if I live sometimes on a time bomb. Has the person next to me in the cinema or the theatre, have they got a cold or on the train or the bus? Am I going to catch it from them? Am I going to end up then with an exacerbation of the pulmonary fibrosis that I now have? I end up in intensive care, come out on oxygen, and I know how pulmonary fibrosis goes, which is not very pleasant. So how long can I fend it off for? I don't know. So there is an underlying level of anxiety at the moment that I still haven't come to terms with. I managed the original diagnosis just about 15 months ago with the usual going through. the stages of grief almost, but going through them fairly quickly and trying to find a way of coping. And my coping mechanism is to find things to do, have plans for the future that we hope we will be able to achieve. So we have the bucket list trip planned for this autumn. We'd hoped to go in February, but couldn't. So we're going in November. Hope we manage it. Because I know I only have one chance to do it. So that's the sort of thing that we've tried to do. Make plans to do things with the family, spend time with the family, and for my husband and I to go to the theatre and so on, and do things like that. So that's the way I... have tried to manage the impact of this latest diagnosis on me.
And Tamás, clearly no two cases are ever the same. So it's valuable, isn't it, that people in the medical profession, doctors, researchers and so on, really do listen to patients and hear about their realities directly from them.
I think it's important to see that all of us go through very different, what people call this journey, I don't like the word "journey", like, you know, the patient journey. It's not a pleasant journey. It's also not something of choice. It's something that happens to you, that's thrown at you by life. But people go through very different trajectories. So that's why I think it's important that... that whoever works in research and development or even pharmaceutical marketing, that they actually listen to the patients and listen to all these different experiences and these different coping strategies. So I think that this diversity, this multitude of experiences is something that's tremendously important and also useful for the development and research and for the marketing processes. Because once you consider those, once you acknowledge the importance of these, you can also be more successful in your own work. Because you can generate products, you can develop products that speak more to the people rather than to abstract scientific objectives or second-hand experiences described by researchers or described by clinicians. So I find it very, very valuable to listen to my peers like Linda and many others and trying to understand what is it that we can learn from that experience rather than just taking a generic approach to, you know, like, this is what it means to live with a disease because it's different for all of us. I think the bottom line is that there is this diversity of the experience which needs to be heard.
And Linda, clearly medical professionals do need to listen to patients, as we've been saying. But what about talking to family and friends? How did you go about telling them?
I have a few very close friends who are very supportive and a wonderfully supportive family. I have other people I don't tell, or I didn't tell, because I didn't want to tell them while there was nothing for them to see and know about. I had a lot of pressure that I should tell my brother and my sister-in-law and my nieces and so on, that I should tell the wider family. I wasn't ready to. And I think I've since seen something, and I think it's been published by Sue Ryder, the Sue Ryder Foundation, if you know that, Tom. And it says : "You do not have to tell anybody until you're ready to tell them." but it so resonated with me. And I think that's something that really we could give. Nobody can tell you when it's time to tell somebody else about something wrong.
Thanks, Linda. That sounds like really valuable advice. And as you've both been saying, you're involved in patient advocacy and engagement. You're both members of the Servier Patient Board. Tamás, what does that actually involve in your case?
Most of us start in this very typical way like Linda or I did, by trying to help other people. And helping other people also helps yourself. And that's well documented in the literature and doesn't really need to be explained a lot. But at the same time, there are some other important aspects to what patient advocates do, such as contributing to science, contributing to research and development through systematically gathering and also generating, if needed, evidence from patient communities. So what we do a lot of times, And that's common practice is telling our stories. This is what we do here today as well. But actually, if you look at all these different stories from many people, then there's also an opportunity to organize that experience into evidence. So to generate evidence from anecdotes, which is an important step, that's something that patient advocates and patient groups or patient advocacy groups have been doing. actually very well for the last, I would say, seven, even ten years. So this contribution to science is another very important aspect of patient advocacy.
Linda, what are your reasons for getting involved with patient advocacy and why is this activity important to you?
I become involved in this sort of work, both for this company and for others and other research projects, because there is no cure for Sjogren's. There is nothing that stops the disease, let alone reverses it. All there is is symptom relief. So the hope that somebody at some point will come up with something that helps Sjögren's patients is what motivates me. It probably will be too late to help me but it will help others. And in the awful thought that any of my family might suffer from it, it will help them. I mean, this is the issue with rare diseases. Often there are no treatments. So that is what motivates me. What's my experience? I was involved with pharmaceutical industry at a very senior level in some of my work with the Prescription Medicines Code of Practice Authority in the UK. And so I think that's one of the reasons I'm fairly comfortable in doing it and speaking out and occasionally being accused of being a bit bolshie, because I will speak out. I'm not frightened to speak out. And yes, the work is rewarding, but it can be difficult and it can be challenging. and there is good pharmaceutical industry and bad pharmaceutical industry from the point of view of the patient. And an example I've given before is if they really try and understand the disease before they start asking you to help them with trials and so on, that means they understand what they're doing. if they come along and ask you for help when they're already going into a phase three trial or a late stage phase two trial, quite frankly, that's a bit too late to be saying, you need to have sorted out your patient outcomes. And so I've encountered both without naming any names.
And Tamás, before we finish, for someone listening who can relate to a lot of what you've been through, what's your parting golden nuggets of advice?
Never give up. That's I think the most important piece of advice. There's life with illness. And it will never be the same. It will never be like old times. It's unlikely that you can go back to where you were before your diagnosis. But that doesn't mean that that's a worse life than before. For many of us, as you also heard from Linda, getting a diagnosis can be a relief because then you know what's going on. Your problems have a name and that can be a relief. And there's always others. There are always people that you can... that you can reach out to. And there will always be hands that are there to hold. That's the most important learning for me from the last almost two decades of this type of work.
And Linda, could I ask you for a parting word of advice for someone who's listening?
Take a deep breath and make the best out of the life that you have got. Particularly if it's a progressive disease, it's only going to get worse. And you will regret what you don't do if you don't at least try. So that's the one message. And my message to other people is to say somebody may look well on the outside, but you don't know what they're dealing with inside. It might not be out and out depression and mental health issues in the way Thomas has explained, but they could be under extreme stress from what they're going through. So just remember that. We don't know what's going on inside.
Okay, well, that's all we've got time for. Thank you very much indeed to you both, Linda and Tamás. Thank you for being so generous with your time and for sharing those personal experiences.
And thank you, Tom.
Thank you.
We wish you the very best. Thank you to you as well for listening. We hope to have you with us again very soon for the next edition of the Patient's Side of the Story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Description
We're going to be hearing from Linda and Tamás, who've both got very different stories to tell. But as you'll hear throughout their discussion, there are some parallels that can be drawn. Both are working as part of Servier's patient engagement program. They share their views about the value of incorporate patients' insights in medical research.
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Transcription
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Hello and welcome to Paris-Saclay for this episode of the Patient's Side of the Story, a series of podcasts which came about thanks to the close collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. This board works with the Servier teams to try to make sure patients'perspectives are taken into consideration at the new Servier R&D Institute at Paris Saclay. These podcasts are a big part of that, listening carefully to patients who have been really kind sharing their personal experiences with us. Today we're going to be hearing from Linda and Tamás, who've both got very different stories to tell, but as you'll hear throughout their discussion, there are some parallels that can be drawn. Linda and Tamás, thank you very much indeed for joining us. Linda, let me start with you. Could you just introduce yourself and tell us about your condition?
My name is Linda Stone. I have to give my age away. Let's just say I'm retired from paid employment now. A mum of two, a grandmother of three. And I was diagnosed with Sjögren's more than 30 years ago. I was very fortunate that I never considered that it defined me, I co-existed with it, until about 18 months ago when some further symptoms emerged, which meant that I can't ignore it anymore to the extent that I was able to before. And Sjögren's is a chronic systemic autoimmune disease that can attack any organ system in the body, but typically manifests with dry eyes, dry mouth and fatigue. Although I was lucky and didn't suffer from the fatigue until more recently.
Thanks for that Linda. Tamás, can I put the same question to you?
Of course. So my name is Tamás Gretzky. I originally come from Hungary, so I have this difficult name, but I've been living in Germany for quite a number of years now. I'm an HIV patient, so I was diagnosed with HIV, with AIDS at the time 20 years ago and I also live with major depression. So these are the two conditions that I have been struggling with initially and now living with rather and I'm happy to talk about the difference of these two concepts. I'm 56 years of age and I'm a father of one and a grandfather of one. And I have been... working as a patient advocate for many years, some 18, 17, 18 years now. I'm a linguist, I'm a psychologist, and I'm also a researcher in social sciences. And my research field is patient advocacy and patient involvement. So I do both practical stuff, but also a little bit of theory.
I think that's interesting because you haven't taken a much more professional approach to the advocacy you do. Whereas I ended up doing it because there was nobody else doing it. And although I have a background as a pharmacist, I have had no formal training in advocacy, but you end up doing what you can do for patients and for yourself.
You're right, Linda. But also, I must admit that initially, when I got into patient advocacy, that was exactly the same situation because at the time in Hungary, 20 years ago, there was so little information available about HIV and what it meant to live with HIV, what the prognosis was how you could cope with this disease. And of course, stigma was much higher. It's still high, but it was much higher at the time, both in the healthcare system and also outside in general society. So initially I started my work very much out of this need for informing people and gathering information, distributing relevant information within the community or communities of especially gay people, gay men in Hungary at the time. And then it grew over time, this work into that professional aspect that you refer to. But in fact, I realized back 18 years ago that there's a huge need, there was a huge need for this type of information, because there was literally nothing in my native language, in Hungarian. I mean, materials were available in German, in English, in French, maybe Spanish, but not in Hungarian. So there was a dire need.
And there's a parallel there as well, because when I was first diagnosed, I was told, "Oh, don't worry about it. You won't get any joint permanent joint damage." because I presented having seized up completely from shoulder to fingertip on both arms. And just dry eyes, dry mouth sent away with drops that were totally ineffective. Thank God we have better drops now. And now we know that it is a serious systemic disease. And people suffer much more from Sjögren's than I think the consultants realised then. And I think it's really, so it's not that different. It's trying to get the information out to people. I look well. I might have sore eyes usually, masked with makeup at the start of the day and going redder and redder as the day goes on. But you look reasonably well and people don't recognise you're ill. And when you have the systemic manifestations, it's even worse. Because I'm... it's now hit my lungs. Probably hit other things earlier on when I didn't realise that was an issue. Probably hit my reproductive system. Before I even knew I had Sjögren's, hit my digestive system and it's now hit my lungs. And I have to be really, really careful where I go, avoid cigarettes, avoid animals, you know, lots of things that could adversely impact my lungs and make them worse. So, I mean, that is a real issue that nobody could warn you about 30 years ago. They knew about the possibility of a mild lymphoma, which thankfully I don't have, but that was about the only one that they knew about earlier.
Linda, you were diagnosed 30 years ago, Tamás 20 years ago. I'm assuming that post-diagnosis, you both had lots of anxiety and lots of questions. Tamás, firstly to you, does that fear gradually subside as time goes by?
I think anxiety and fear are part of the package, but they do subside over time. And there are certain strategies, coping strategies that will help you. with these parts of the package. And I think that what really helps is if you reach out to people, if you reach out to others and seek support, seek advice, seek company so that you're not isolated and you don't end up completely alone with your illness or illnesses.
And Linda, did you feel well guided throughout the process leading up to diagnosis? And did you also feel that sense of anxiety like Tamás did?
I was relieved to be diagnosed. I was so relieved to be diagnosed and I know I was lucky I was diagnosed relatively quickly because we hear of patients who it's taken years to get a diagnosis. I was diagnosed within about three months. And once I was diagnosed, the relief was so great, I think that overwhelmed a lot of the concern and anxiety at that stage. I didn't have time to be anxious. I had two young children. I was the president of the Royal Pharmaceutical Society of Great Britain at the time, which was both the regulator and the professional governing body for more than 40,000, nearly 50,000 pharmacists. So I didn't have time to be anxious then. What has been a source of great anxiety has been what's happened to me in the last 18 months. And I live, if I can say, I feel as if I live sometimes on a time bomb. Has the person next to me in the cinema or the theatre, have they got a cold or on the train or the bus? Am I going to catch it from them? Am I going to end up then with an exacerbation of the pulmonary fibrosis that I now have? I end up in intensive care, come out on oxygen, and I know how pulmonary fibrosis goes, which is not very pleasant. So how long can I fend it off for? I don't know. So there is an underlying level of anxiety at the moment that I still haven't come to terms with. I managed the original diagnosis just about 15 months ago with the usual going through. the stages of grief almost, but going through them fairly quickly and trying to find a way of coping. And my coping mechanism is to find things to do, have plans for the future that we hope we will be able to achieve. So we have the bucket list trip planned for this autumn. We'd hoped to go in February, but couldn't. So we're going in November. Hope we manage it. Because I know I only have one chance to do it. So that's the sort of thing that we've tried to do. Make plans to do things with the family, spend time with the family, and for my husband and I to go to the theatre and so on, and do things like that. So that's the way I... have tried to manage the impact of this latest diagnosis on me.
And Tamás, clearly no two cases are ever the same. So it's valuable, isn't it, that people in the medical profession, doctors, researchers and so on, really do listen to patients and hear about their realities directly from them.
I think it's important to see that all of us go through very different, what people call this journey, I don't like the word "journey", like, you know, the patient journey. It's not a pleasant journey. It's also not something of choice. It's something that happens to you, that's thrown at you by life. But people go through very different trajectories. So that's why I think it's important that... that whoever works in research and development or even pharmaceutical marketing, that they actually listen to the patients and listen to all these different experiences and these different coping strategies. So I think that this diversity, this multitude of experiences is something that's tremendously important and also useful for the development and research and for the marketing processes. Because once you consider those, once you acknowledge the importance of these, you can also be more successful in your own work. Because you can generate products, you can develop products that speak more to the people rather than to abstract scientific objectives or second-hand experiences described by researchers or described by clinicians. So I find it very, very valuable to listen to my peers like Linda and many others and trying to understand what is it that we can learn from that experience rather than just taking a generic approach to, you know, like, this is what it means to live with a disease because it's different for all of us. I think the bottom line is that there is this diversity of the experience which needs to be heard.
And Linda, clearly medical professionals do need to listen to patients, as we've been saying. But what about talking to family and friends? How did you go about telling them?
I have a few very close friends who are very supportive and a wonderfully supportive family. I have other people I don't tell, or I didn't tell, because I didn't want to tell them while there was nothing for them to see and know about. I had a lot of pressure that I should tell my brother and my sister-in-law and my nieces and so on, that I should tell the wider family. I wasn't ready to. And I think I've since seen something, and I think it's been published by Sue Ryder, the Sue Ryder Foundation, if you know that, Tom. And it says : "You do not have to tell anybody until you're ready to tell them." but it so resonated with me. And I think that's something that really we could give. Nobody can tell you when it's time to tell somebody else about something wrong.
Thanks, Linda. That sounds like really valuable advice. And as you've both been saying, you're involved in patient advocacy and engagement. You're both members of the Servier Patient Board. Tamás, what does that actually involve in your case?
Most of us start in this very typical way like Linda or I did, by trying to help other people. And helping other people also helps yourself. And that's well documented in the literature and doesn't really need to be explained a lot. But at the same time, there are some other important aspects to what patient advocates do, such as contributing to science, contributing to research and development through systematically gathering and also generating, if needed, evidence from patient communities. So what we do a lot of times, And that's common practice is telling our stories. This is what we do here today as well. But actually, if you look at all these different stories from many people, then there's also an opportunity to organize that experience into evidence. So to generate evidence from anecdotes, which is an important step, that's something that patient advocates and patient groups or patient advocacy groups have been doing. actually very well for the last, I would say, seven, even ten years. So this contribution to science is another very important aspect of patient advocacy.
Linda, what are your reasons for getting involved with patient advocacy and why is this activity important to you?
I become involved in this sort of work, both for this company and for others and other research projects, because there is no cure for Sjogren's. There is nothing that stops the disease, let alone reverses it. All there is is symptom relief. So the hope that somebody at some point will come up with something that helps Sjögren's patients is what motivates me. It probably will be too late to help me but it will help others. And in the awful thought that any of my family might suffer from it, it will help them. I mean, this is the issue with rare diseases. Often there are no treatments. So that is what motivates me. What's my experience? I was involved with pharmaceutical industry at a very senior level in some of my work with the Prescription Medicines Code of Practice Authority in the UK. And so I think that's one of the reasons I'm fairly comfortable in doing it and speaking out and occasionally being accused of being a bit bolshie, because I will speak out. I'm not frightened to speak out. And yes, the work is rewarding, but it can be difficult and it can be challenging. and there is good pharmaceutical industry and bad pharmaceutical industry from the point of view of the patient. And an example I've given before is if they really try and understand the disease before they start asking you to help them with trials and so on, that means they understand what they're doing. if they come along and ask you for help when they're already going into a phase three trial or a late stage phase two trial, quite frankly, that's a bit too late to be saying, you need to have sorted out your patient outcomes. And so I've encountered both without naming any names.
And Tamás, before we finish, for someone listening who can relate to a lot of what you've been through, what's your parting golden nuggets of advice?
Never give up. That's I think the most important piece of advice. There's life with illness. And it will never be the same. It will never be like old times. It's unlikely that you can go back to where you were before your diagnosis. But that doesn't mean that that's a worse life than before. For many of us, as you also heard from Linda, getting a diagnosis can be a relief because then you know what's going on. Your problems have a name and that can be a relief. And there's always others. There are always people that you can... that you can reach out to. And there will always be hands that are there to hold. That's the most important learning for me from the last almost two decades of this type of work.
And Linda, could I ask you for a parting word of advice for someone who's listening?
Take a deep breath and make the best out of the life that you have got. Particularly if it's a progressive disease, it's only going to get worse. And you will regret what you don't do if you don't at least try. So that's the one message. And my message to other people is to say somebody may look well on the outside, but you don't know what they're dealing with inside. It might not be out and out depression and mental health issues in the way Thomas has explained, but they could be under extreme stress from what they're going through. So just remember that. We don't know what's going on inside.
Okay, well, that's all we've got time for. Thank you very much indeed to you both, Linda and Tamás. Thank you for being so generous with your time and for sharing those personal experiences.
And thank you, Tom.
Thank you.
We wish you the very best. Thank you to you as well for listening. We hope to have you with us again very soon for the next edition of the Patient's Side of the Story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
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