Description
In our podcast "Patient's Side of the Story" we're speaking to Estelle and Veerle : two women, two stories, two journeys that they are generous enough to share with us today. They are currently working as part of the 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
(Voiceover) 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. This is a series of podcast, which is the result of 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 take patients'perspectives into consideration at the new Servier R&D Institute at Paris-Saclay. And these podcasts are an illustration of how we really are listening. Today we're speaking to Estelle and Veerle, who've both got very different stories to tell. But as you will hear as they share their experiences with us, there are some parallels that can be drawn. Thank you very much indeed for taking the time to talk to us. Welcome to both of you.
Hi Tom.
Hi Tom, thanks for having us.
Thanks again for being here. Could you just start by introducing yourselves and tell us about your condition? Estelle, perhaps you could kick off.
Yeah, my name is Estelle. I am an endometriosis patient and endometriosis is quite a poorly understood disease, although it's quite common. It's about 10 to 15% of girls and women to have it. It's misunderstood to be a menstrual disease because one of the symptoms is pain during menstruation. But in fact, it's much more than that. It's a systemic inflammatory disease in which these endometriosis cells, they grow all around the pelvis, kind of even up to the lungs, and they create pain, inflammation, they create kind of fibrosis, ropey tissue that damages organs in the body. And there are a whole plethora of symptoms, pain and fertility, pain with intimate functions, so that's bowel movements, the bladder with sex, and fatigue, bloating, migraines and so on. So it's quite a debilitating disease, but because it's related to menstruation, it's surrounded by stigma and taboos.
Thanks, Estelle. And Veerle, can I ask you to introduce yourself as well?
Sure, Tom. I'm Veerle. I live in Belgium. I'm a mom of four kids, and I've been diagnosed 13 years ago with Parkinson's, which is a common disease. It's one of the fastest-growing neurological conditions at all. at the moment, but it's quite rare if the onset of the disease takes place when you're only 45, then it becomes a rare condition. And actually, we do not produce the pulmonologic neurons anymore, which means that the communication between our brain and our functioning, every muscle, does not work anymore. So, yeah. And it affects, they say it's mostly tremor or stiffness, but it affects every part of your body. As Estelle also said, it causes bladder issues, every function in your body, the digestion. is affected by it. And because the medication and the disease itself affects behaviour and causes behavioural problems, it causes a big stigma around the illnesses.
Veerle, how are you feeling today?
I just went down with Covid, so I see she's a bit slurred, but I'm OK generally. Thank you for asking.
And Estelle, what about you? How are you feeling?
I'm feeling quite well. I mean, I must say that my well-being is a result of having had expert care for endometriosis and having had surgery with an endometriosis specialist and really setting up my life to accommodate my limitations and setting up a very, very good network of health care providers. Yeah, it's a work in itself to be well.
Yes, same goes for Parkinson's. I mean, we kind of self-manage our condition quite. We have to because we only see our neurologist like twice a year for 15 minutes, half an hour. And it's up to us, you know, to consider healthy meals, exercise a lot. Because all those little things help, but it's part of multidisciplinary care which is not provided yet in all countries. So we kind of have to be on it to keep control over the condition. I think in that respect, Estelle's condition kind of relates in the same way.
So you mentioned there's a bit of a stigma, but people are talking more about endometriosis than they were. Women's health, menstruation are much more discussable than they were, say, 10 to 15 years ago, aren't they?
Most definitely, and that's very positive and not just because taboos are unhelpful in and of themselves. The breaking down of taboos and stigma around endometriosis actually can help women get diagnosed earlier because if we're talking about it, if people understand what the symptoms are and so on, girls will say to each other, "Hey, I heard about this.", or they'll say, "Maybe that's what I've got", and they'll go and perhaps ask about it and get a diagnosis which can then drop it, reduce it by years. and win you years of a kind of practical help and engagement. So that is really important. I guess you will have seen in France that there was a national strategy introduced in 2022 to tackle endometriosis, in which Macron said it's not a women's problem, it's a societal problem, which is great. And then Spain is the first European nation to have introduced the law, enabling women to take paid leave for severe period pain. And that's just one month ago, it was June. So all of this helps to promote awareness and destigmatization. And that's great. And I see that also in my personal interactions. People have come to me and said, "Oh, I think I get now what you've been going through. I think I finally get it." And that's great. But it's taken a lot of work from the patient community to do that awareness raising too.
Veerle, I know you've got a totally different condition, but can you draw any parallels from what Estelle has just said in terms of awareness, public perception, and the conversation surrounding Parkinson's? Does anything she said sound familiar?
Yes, it's so important. I was just at the beginning of July, I was at the WBC, the World Park School Conference, which was held in Barcelona. And it was for the first time, it was actually a group of women with Parkinson's and it's the first time ever that the focus is on the impact that the hormonal cycle has on the symptoms. And the thing that happened and being... I mean it's such a huge item and it's being discussed, it's so majorly important for us young women because there are people who still have children. So it's very important.
Thanks, Veerle. Now let's talk about the process of how you both got diagnosed. Was this a time consuming, perhaps a frustrating experience, Estelle?
Yeah, definitely. It took me some time to get my diagnosis and I did encounter doctors who told me that the symptoms I was reporting could have no link whatsoever to my hormones. You know, I was told that that's impossible, what you're describing. There's no way that can be linked to your period. I was told the symptom I reported was absolutely normal when it clearly wasn't. So there has been this kind of history, let's say, of women not being listened to or being perceived as plaintiff. And then what you're finding is you're reporting important information that gives the healthcare provider clues as to what's going on inside you, and it's written off as sort of attention-seeking behavior. I did experience that. I would say it's kind of like a kind of patriarchy in medicine, but it's not only from male doctors. It's more like a culture of patriarchy that exists.
Yes, same goes for me. I was going through divorce at the time of my diagnosis, so "it was all in my head" and it was because of stress and I shouldn't exaggerate. You know the words that you get to hear at that stage. Yeah, it's something you have to deal with.
And Veerle, has progress been made with regard to diagnosis and treatment for Parkinson's disease?
Well, we know the Michael J. Fox Foundation found a biomarker, which makes us now diagnose earlier to realize that we still have a illness which has no cure. But on a technical level, there are advances with regards to the brain's simulation, which I have, which kind of freezes the symptoms for a few number of years. So that's good. There's more studies being done into the impact of food, of diets, which might help a person. There's more and more evidence of the benefit of exercise. But there are progressions being made, but I think all in all, I don't think it's one illness, only one cure. I think depending on pathologies, I think we will go to subdivision of several of, according to the causes, we go to subdivisions of the patients and according to that different medications will be found. In that effect also the genetic screening is very important. So there are causes being made of this, a lot of sensibility is put on a patient itself and it's not being taken on by the neurologist so that's a bit of a downside.
Thanks and Estelle, there have been some pretty significant developments with endometriosis, haven't there, in particular regarding diagnosis because before testing was almost impossible, wasn't it ?
Well, the biggest breakthrough I would say has been exactly in this, in the test, a diagnostic test, in that previously the way to find out if you had endometriosis was, well, we have to cut you open and look inside you, which when I first heard that felt almost medieval to me. There's been some development in using MRIs and ultrasound to some degree, but the biggest breakthrough I would say has been the development of a salivary diagnostic test, which was announced last year also in France. And it has apparently 98% accuracy. It's a micro, an miRNA test to look at genetic predisposition to what's in your saliva, the genes that are there. And I found this quite exciting because 12 years ago, I gave a saliva sample to an organization that was exploring exactly this, the genetic predisposition. So it's great that there is something like that that can also save people from unnecessary surgery.
Veerle, when you first got diagnosed, did you find there was help out there? Did you join support groups and that sort of thing? And did you find it was easy to find those kinds of groups?
Yeah, I Googled obviously my condition. So I came with the Flemish Patient Association. But yeah, I didn't really connect with the people there so I went on and luckily I got the chance so I heard of... I got into training and that was helpful for me to get acquainted with people who experience the same thing even though in a different illness, but the problems that they face are the same, the problems that young people with MS (Multiple Sclerosis), for example face, cystic fibrosis, the storyline is the same everywhere. And that gives me the power to keep on hoping because I'm now 13 years into my diagnosis. I've had brain surgeries in 2017. So I did everything I could to make the most difficult situation. But it's difficult that you go and hear a lot of interesting development, but it does not mean my everyday life. I've got four kids today, so I need to be on top form every day. And it's not always easy.
I agree with what Veerle said. There are these kind of uncanny commonalities between us as patients with quite different diseases. And I've also gotten a lot of support and inspiration also from other people like Dela. And even though we don't share the same disease, but I did get quite involved in the endometriosis patient network. And I learned a lot from them. and I gave a lot back over the years, and I developed quite a nice friendship network, I would say, with women who are going through the same thing, and we have a kind of understanding that we believe each other, that we trust what the other one is saying is true. And then we share tips and that kind of thing with each other on lifestyle, but also things like which doctor we recommend, and what treatments we're on and that kind of thing. That's helped me a huge amount, yeah. [Tom] : "Now you're both members of the Servier Patient Board. Veerle, what's this involve for you ?"
Well, if you get a diagnosis like Parkinson's, which has no cure, you just have to deal with it by yourself and there was a lot of frustration and a lot of anger and what patient advocacy or activism you has given me is a way to channel that frustration and put it into positive energy for others. The amount of online Facebook groups that I've started, I put patients into in contact with researchers. I've done Servier but I have been quite busy, basically with my full-time volunteering. It's given my life a new direction, a new "raison d'être". And very nice to have a, that was a good thing about Barcelona. You know, the month I finally met up with the people that I've known from working together with online, people from Japan, the States, South America, and seeing those finally for the first time in 10 years, it was an amazing experience, I must say.
And Estelle, what about you? And tell us about what patient advocacy has brought to you.
It started off, as I say, with this quite strong connection with the patient support groups and sharing of information and wanting to give that back and that honestly one thing led to another. I've also enjoyed, as Veerle said, this kind of international network of other patients and feeling part of a movement that is making the world a better place. That is, yeah like she said, a "raison d'être". That is kind of what it is. And for me, it's also developed. I've developed quite a lot of knowledge and skills. It's influenced my professional life. And I feel like, you know, then I'm bringing many different perspectives that of a patient, of being part of health system, of being an expert in patient engagement and being able to bring like the patient voice to the table in many different contexts. So it's really been a huge kind of educational development for myself.
Veerle, in your view, what is the role of a patient advocate?
I see patient advocates as translators between the scientific world and just your average person patient. It's our job to translate what's going on, to give hope. Because you often hear, I mean, there's no investment in neurodegenerative diseases like Alzheimer's and Parkinson's, but there is so much going on and there are so many people trying to help us and trying to find a cure and giving really their lives into finding a cure. So, I mean, people are just going by, diagnosed every day on an everyday basis, are not aware of that, so they get frustrated and being able to give that hope and to translate the knowledge that's out there.
So why do you think it's important that pharmaceutical companies should listen to patients?
I like to draw an analogy to say, if you were, for example, to be inventing an electronic violin, you would not just develop it and then give it to a violinist and say, yeah, we have the perfect violin for you. You would involve them from the beginning. You would say, "What is there on the market? What do you need? What's missing? Why is that? What's there not working for you? What would you like? What are your dreams?" And you would consult with them all along the way. exactly what should be happening with patients and it's happening increasingly and that, you know, scientists they've had this incredible expertise and knowledge in science and they've been focusing on things in a very scientific way like a target a molecule that will have this and that effect in the body um which they associate with the disease but if they were to you know stop and step back and say "Let me talk to a bunch of patients, let me hear about their broader experience" you we could actually give them ideas, sort of eureka moments where they could think, well, "Actually, let's tackle this disease from a completely different way. Instead of hormones, let's look at neurological messages or let's look at nerve transmission, whatever, however that works." It's like we can bring insights that may trigger new scientific ideas. [Tom] : "Now we're coming to the end of this podcast but before we finish, could I ask you both for your advice to someone who's going through what you've been through, perhaps someone going through a dark time. Veerle, what do you advise ?"
Well, just reach out to your peers, find someone who knows how you feel about what you've been through and just share. Just don't hide away, because it's an illness which has to deal with stigma. Oftentimes people just keep indoors and they don't come out. Just don't do that. Just reach out and just let someone know that you're not feeling okay. Do what you enjoy doing and keep doing it as much as you can because that gives you... that boosts your dopamine. So that's quite helpful.
And Estelle, can I ask for your parting advice?
Believe in yourself and sort of accept yourself, your limitations with some grace as well. To be kind to yourself in your limitations, to have a kind, compassionate inner voice.
Well, thank you so much for that parting advice. That's all we've got time for. Thank you very much indeed, Estelle and Veerle, for being so generous with your time and for sharing those very personal experiences. I'm sure your testimony will be insightful and inspirational to people who are listening. We wish you the very best.
Thank you very much for having me.
Thanks, Tom. And thanks to those of you who are listening to this podcast.
And thanks again to both of you. And thanks to you for listening. We hope to have you with us again very soon for another edition of Patient's side of the story. Patient's side of the story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Description
In our podcast "Patient's Side of the Story" we're speaking to Estelle and Veerle : two women, two stories, two journeys that they are generous enough to share with us today. They are currently working as part of the 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
(Voiceover) 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. This is a series of podcast, which is the result of 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 take patients'perspectives into consideration at the new Servier R&D Institute at Paris-Saclay. And these podcasts are an illustration of how we really are listening. Today we're speaking to Estelle and Veerle, who've both got very different stories to tell. But as you will hear as they share their experiences with us, there are some parallels that can be drawn. Thank you very much indeed for taking the time to talk to us. Welcome to both of you.
Hi Tom.
Hi Tom, thanks for having us.
Thanks again for being here. Could you just start by introducing yourselves and tell us about your condition? Estelle, perhaps you could kick off.
Yeah, my name is Estelle. I am an endometriosis patient and endometriosis is quite a poorly understood disease, although it's quite common. It's about 10 to 15% of girls and women to have it. It's misunderstood to be a menstrual disease because one of the symptoms is pain during menstruation. But in fact, it's much more than that. It's a systemic inflammatory disease in which these endometriosis cells, they grow all around the pelvis, kind of even up to the lungs, and they create pain, inflammation, they create kind of fibrosis, ropey tissue that damages organs in the body. And there are a whole plethora of symptoms, pain and fertility, pain with intimate functions, so that's bowel movements, the bladder with sex, and fatigue, bloating, migraines and so on. So it's quite a debilitating disease, but because it's related to menstruation, it's surrounded by stigma and taboos.
Thanks, Estelle. And Veerle, can I ask you to introduce yourself as well?
Sure, Tom. I'm Veerle. I live in Belgium. I'm a mom of four kids, and I've been diagnosed 13 years ago with Parkinson's, which is a common disease. It's one of the fastest-growing neurological conditions at all. at the moment, but it's quite rare if the onset of the disease takes place when you're only 45, then it becomes a rare condition. And actually, we do not produce the pulmonologic neurons anymore, which means that the communication between our brain and our functioning, every muscle, does not work anymore. So, yeah. And it affects, they say it's mostly tremor or stiffness, but it affects every part of your body. As Estelle also said, it causes bladder issues, every function in your body, the digestion. is affected by it. And because the medication and the disease itself affects behaviour and causes behavioural problems, it causes a big stigma around the illnesses.
Veerle, how are you feeling today?
I just went down with Covid, so I see she's a bit slurred, but I'm OK generally. Thank you for asking.
And Estelle, what about you? How are you feeling?
I'm feeling quite well. I mean, I must say that my well-being is a result of having had expert care for endometriosis and having had surgery with an endometriosis specialist and really setting up my life to accommodate my limitations and setting up a very, very good network of health care providers. Yeah, it's a work in itself to be well.
Yes, same goes for Parkinson's. I mean, we kind of self-manage our condition quite. We have to because we only see our neurologist like twice a year for 15 minutes, half an hour. And it's up to us, you know, to consider healthy meals, exercise a lot. Because all those little things help, but it's part of multidisciplinary care which is not provided yet in all countries. So we kind of have to be on it to keep control over the condition. I think in that respect, Estelle's condition kind of relates in the same way.
So you mentioned there's a bit of a stigma, but people are talking more about endometriosis than they were. Women's health, menstruation are much more discussable than they were, say, 10 to 15 years ago, aren't they?
Most definitely, and that's very positive and not just because taboos are unhelpful in and of themselves. The breaking down of taboos and stigma around endometriosis actually can help women get diagnosed earlier because if we're talking about it, if people understand what the symptoms are and so on, girls will say to each other, "Hey, I heard about this.", or they'll say, "Maybe that's what I've got", and they'll go and perhaps ask about it and get a diagnosis which can then drop it, reduce it by years. and win you years of a kind of practical help and engagement. So that is really important. I guess you will have seen in France that there was a national strategy introduced in 2022 to tackle endometriosis, in which Macron said it's not a women's problem, it's a societal problem, which is great. And then Spain is the first European nation to have introduced the law, enabling women to take paid leave for severe period pain. And that's just one month ago, it was June. So all of this helps to promote awareness and destigmatization. And that's great. And I see that also in my personal interactions. People have come to me and said, "Oh, I think I get now what you've been going through. I think I finally get it." And that's great. But it's taken a lot of work from the patient community to do that awareness raising too.
Veerle, I know you've got a totally different condition, but can you draw any parallels from what Estelle has just said in terms of awareness, public perception, and the conversation surrounding Parkinson's? Does anything she said sound familiar?
Yes, it's so important. I was just at the beginning of July, I was at the WBC, the World Park School Conference, which was held in Barcelona. And it was for the first time, it was actually a group of women with Parkinson's and it's the first time ever that the focus is on the impact that the hormonal cycle has on the symptoms. And the thing that happened and being... I mean it's such a huge item and it's being discussed, it's so majorly important for us young women because there are people who still have children. So it's very important.
Thanks, Veerle. Now let's talk about the process of how you both got diagnosed. Was this a time consuming, perhaps a frustrating experience, Estelle?
Yeah, definitely. It took me some time to get my diagnosis and I did encounter doctors who told me that the symptoms I was reporting could have no link whatsoever to my hormones. You know, I was told that that's impossible, what you're describing. There's no way that can be linked to your period. I was told the symptom I reported was absolutely normal when it clearly wasn't. So there has been this kind of history, let's say, of women not being listened to or being perceived as plaintiff. And then what you're finding is you're reporting important information that gives the healthcare provider clues as to what's going on inside you, and it's written off as sort of attention-seeking behavior. I did experience that. I would say it's kind of like a kind of patriarchy in medicine, but it's not only from male doctors. It's more like a culture of patriarchy that exists.
Yes, same goes for me. I was going through divorce at the time of my diagnosis, so "it was all in my head" and it was because of stress and I shouldn't exaggerate. You know the words that you get to hear at that stage. Yeah, it's something you have to deal with.
And Veerle, has progress been made with regard to diagnosis and treatment for Parkinson's disease?
Well, we know the Michael J. Fox Foundation found a biomarker, which makes us now diagnose earlier to realize that we still have a illness which has no cure. But on a technical level, there are advances with regards to the brain's simulation, which I have, which kind of freezes the symptoms for a few number of years. So that's good. There's more studies being done into the impact of food, of diets, which might help a person. There's more and more evidence of the benefit of exercise. But there are progressions being made, but I think all in all, I don't think it's one illness, only one cure. I think depending on pathologies, I think we will go to subdivision of several of, according to the causes, we go to subdivisions of the patients and according to that different medications will be found. In that effect also the genetic screening is very important. So there are causes being made of this, a lot of sensibility is put on a patient itself and it's not being taken on by the neurologist so that's a bit of a downside.
Thanks and Estelle, there have been some pretty significant developments with endometriosis, haven't there, in particular regarding diagnosis because before testing was almost impossible, wasn't it ?
Well, the biggest breakthrough I would say has been exactly in this, in the test, a diagnostic test, in that previously the way to find out if you had endometriosis was, well, we have to cut you open and look inside you, which when I first heard that felt almost medieval to me. There's been some development in using MRIs and ultrasound to some degree, but the biggest breakthrough I would say has been the development of a salivary diagnostic test, which was announced last year also in France. And it has apparently 98% accuracy. It's a micro, an miRNA test to look at genetic predisposition to what's in your saliva, the genes that are there. And I found this quite exciting because 12 years ago, I gave a saliva sample to an organization that was exploring exactly this, the genetic predisposition. So it's great that there is something like that that can also save people from unnecessary surgery.
Veerle, when you first got diagnosed, did you find there was help out there? Did you join support groups and that sort of thing? And did you find it was easy to find those kinds of groups?
Yeah, I Googled obviously my condition. So I came with the Flemish Patient Association. But yeah, I didn't really connect with the people there so I went on and luckily I got the chance so I heard of... I got into training and that was helpful for me to get acquainted with people who experience the same thing even though in a different illness, but the problems that they face are the same, the problems that young people with MS (Multiple Sclerosis), for example face, cystic fibrosis, the storyline is the same everywhere. And that gives me the power to keep on hoping because I'm now 13 years into my diagnosis. I've had brain surgeries in 2017. So I did everything I could to make the most difficult situation. But it's difficult that you go and hear a lot of interesting development, but it does not mean my everyday life. I've got four kids today, so I need to be on top form every day. And it's not always easy.
I agree with what Veerle said. There are these kind of uncanny commonalities between us as patients with quite different diseases. And I've also gotten a lot of support and inspiration also from other people like Dela. And even though we don't share the same disease, but I did get quite involved in the endometriosis patient network. And I learned a lot from them. and I gave a lot back over the years, and I developed quite a nice friendship network, I would say, with women who are going through the same thing, and we have a kind of understanding that we believe each other, that we trust what the other one is saying is true. And then we share tips and that kind of thing with each other on lifestyle, but also things like which doctor we recommend, and what treatments we're on and that kind of thing. That's helped me a huge amount, yeah. [Tom] : "Now you're both members of the Servier Patient Board. Veerle, what's this involve for you ?"
Well, if you get a diagnosis like Parkinson's, which has no cure, you just have to deal with it by yourself and there was a lot of frustration and a lot of anger and what patient advocacy or activism you has given me is a way to channel that frustration and put it into positive energy for others. The amount of online Facebook groups that I've started, I put patients into in contact with researchers. I've done Servier but I have been quite busy, basically with my full-time volunteering. It's given my life a new direction, a new "raison d'être". And very nice to have a, that was a good thing about Barcelona. You know, the month I finally met up with the people that I've known from working together with online, people from Japan, the States, South America, and seeing those finally for the first time in 10 years, it was an amazing experience, I must say.
And Estelle, what about you? And tell us about what patient advocacy has brought to you.
It started off, as I say, with this quite strong connection with the patient support groups and sharing of information and wanting to give that back and that honestly one thing led to another. I've also enjoyed, as Veerle said, this kind of international network of other patients and feeling part of a movement that is making the world a better place. That is, yeah like she said, a "raison d'être". That is kind of what it is. And for me, it's also developed. I've developed quite a lot of knowledge and skills. It's influenced my professional life. And I feel like, you know, then I'm bringing many different perspectives that of a patient, of being part of health system, of being an expert in patient engagement and being able to bring like the patient voice to the table in many different contexts. So it's really been a huge kind of educational development for myself.
Veerle, in your view, what is the role of a patient advocate?
I see patient advocates as translators between the scientific world and just your average person patient. It's our job to translate what's going on, to give hope. Because you often hear, I mean, there's no investment in neurodegenerative diseases like Alzheimer's and Parkinson's, but there is so much going on and there are so many people trying to help us and trying to find a cure and giving really their lives into finding a cure. So, I mean, people are just going by, diagnosed every day on an everyday basis, are not aware of that, so they get frustrated and being able to give that hope and to translate the knowledge that's out there.
So why do you think it's important that pharmaceutical companies should listen to patients?
I like to draw an analogy to say, if you were, for example, to be inventing an electronic violin, you would not just develop it and then give it to a violinist and say, yeah, we have the perfect violin for you. You would involve them from the beginning. You would say, "What is there on the market? What do you need? What's missing? Why is that? What's there not working for you? What would you like? What are your dreams?" And you would consult with them all along the way. exactly what should be happening with patients and it's happening increasingly and that, you know, scientists they've had this incredible expertise and knowledge in science and they've been focusing on things in a very scientific way like a target a molecule that will have this and that effect in the body um which they associate with the disease but if they were to you know stop and step back and say "Let me talk to a bunch of patients, let me hear about their broader experience" you we could actually give them ideas, sort of eureka moments where they could think, well, "Actually, let's tackle this disease from a completely different way. Instead of hormones, let's look at neurological messages or let's look at nerve transmission, whatever, however that works." It's like we can bring insights that may trigger new scientific ideas. [Tom] : "Now we're coming to the end of this podcast but before we finish, could I ask you both for your advice to someone who's going through what you've been through, perhaps someone going through a dark time. Veerle, what do you advise ?"
Well, just reach out to your peers, find someone who knows how you feel about what you've been through and just share. Just don't hide away, because it's an illness which has to deal with stigma. Oftentimes people just keep indoors and they don't come out. Just don't do that. Just reach out and just let someone know that you're not feeling okay. Do what you enjoy doing and keep doing it as much as you can because that gives you... that boosts your dopamine. So that's quite helpful.
And Estelle, can I ask for your parting advice?
Believe in yourself and sort of accept yourself, your limitations with some grace as well. To be kind to yourself in your limitations, to have a kind, compassionate inner voice.
Well, thank you so much for that parting advice. That's all we've got time for. Thank you very much indeed, Estelle and Veerle, for being so generous with your time and for sharing those very personal experiences. I'm sure your testimony will be insightful and inspirational to people who are listening. We wish you the very best.
Thank you very much for having me.
Thanks, Tom. And thanks to those of you who are listening to this podcast.
And thanks again to both of you. And thanks to you for listening. We hope to have you with us again very soon for another edition of Patient's side of the story. Patient's side of the story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
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Description
In our podcast "Patient's Side of the Story" we're speaking to Estelle and Veerle : two women, two stories, two journeys that they are generous enough to share with us today. They are currently working as part of the 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
(Voiceover) 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. This is a series of podcast, which is the result of 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 take patients'perspectives into consideration at the new Servier R&D Institute at Paris-Saclay. And these podcasts are an illustration of how we really are listening. Today we're speaking to Estelle and Veerle, who've both got very different stories to tell. But as you will hear as they share their experiences with us, there are some parallels that can be drawn. Thank you very much indeed for taking the time to talk to us. Welcome to both of you.
Hi Tom.
Hi Tom, thanks for having us.
Thanks again for being here. Could you just start by introducing yourselves and tell us about your condition? Estelle, perhaps you could kick off.
Yeah, my name is Estelle. I am an endometriosis patient and endometriosis is quite a poorly understood disease, although it's quite common. It's about 10 to 15% of girls and women to have it. It's misunderstood to be a menstrual disease because one of the symptoms is pain during menstruation. But in fact, it's much more than that. It's a systemic inflammatory disease in which these endometriosis cells, they grow all around the pelvis, kind of even up to the lungs, and they create pain, inflammation, they create kind of fibrosis, ropey tissue that damages organs in the body. And there are a whole plethora of symptoms, pain and fertility, pain with intimate functions, so that's bowel movements, the bladder with sex, and fatigue, bloating, migraines and so on. So it's quite a debilitating disease, but because it's related to menstruation, it's surrounded by stigma and taboos.
Thanks, Estelle. And Veerle, can I ask you to introduce yourself as well?
Sure, Tom. I'm Veerle. I live in Belgium. I'm a mom of four kids, and I've been diagnosed 13 years ago with Parkinson's, which is a common disease. It's one of the fastest-growing neurological conditions at all. at the moment, but it's quite rare if the onset of the disease takes place when you're only 45, then it becomes a rare condition. And actually, we do not produce the pulmonologic neurons anymore, which means that the communication between our brain and our functioning, every muscle, does not work anymore. So, yeah. And it affects, they say it's mostly tremor or stiffness, but it affects every part of your body. As Estelle also said, it causes bladder issues, every function in your body, the digestion. is affected by it. And because the medication and the disease itself affects behaviour and causes behavioural problems, it causes a big stigma around the illnesses.
Veerle, how are you feeling today?
I just went down with Covid, so I see she's a bit slurred, but I'm OK generally. Thank you for asking.
And Estelle, what about you? How are you feeling?
I'm feeling quite well. I mean, I must say that my well-being is a result of having had expert care for endometriosis and having had surgery with an endometriosis specialist and really setting up my life to accommodate my limitations and setting up a very, very good network of health care providers. Yeah, it's a work in itself to be well.
Yes, same goes for Parkinson's. I mean, we kind of self-manage our condition quite. We have to because we only see our neurologist like twice a year for 15 minutes, half an hour. And it's up to us, you know, to consider healthy meals, exercise a lot. Because all those little things help, but it's part of multidisciplinary care which is not provided yet in all countries. So we kind of have to be on it to keep control over the condition. I think in that respect, Estelle's condition kind of relates in the same way.
So you mentioned there's a bit of a stigma, but people are talking more about endometriosis than they were. Women's health, menstruation are much more discussable than they were, say, 10 to 15 years ago, aren't they?
Most definitely, and that's very positive and not just because taboos are unhelpful in and of themselves. The breaking down of taboos and stigma around endometriosis actually can help women get diagnosed earlier because if we're talking about it, if people understand what the symptoms are and so on, girls will say to each other, "Hey, I heard about this.", or they'll say, "Maybe that's what I've got", and they'll go and perhaps ask about it and get a diagnosis which can then drop it, reduce it by years. and win you years of a kind of practical help and engagement. So that is really important. I guess you will have seen in France that there was a national strategy introduced in 2022 to tackle endometriosis, in which Macron said it's not a women's problem, it's a societal problem, which is great. And then Spain is the first European nation to have introduced the law, enabling women to take paid leave for severe period pain. And that's just one month ago, it was June. So all of this helps to promote awareness and destigmatization. And that's great. And I see that also in my personal interactions. People have come to me and said, "Oh, I think I get now what you've been going through. I think I finally get it." And that's great. But it's taken a lot of work from the patient community to do that awareness raising too.
Veerle, I know you've got a totally different condition, but can you draw any parallels from what Estelle has just said in terms of awareness, public perception, and the conversation surrounding Parkinson's? Does anything she said sound familiar?
Yes, it's so important. I was just at the beginning of July, I was at the WBC, the World Park School Conference, which was held in Barcelona. And it was for the first time, it was actually a group of women with Parkinson's and it's the first time ever that the focus is on the impact that the hormonal cycle has on the symptoms. And the thing that happened and being... I mean it's such a huge item and it's being discussed, it's so majorly important for us young women because there are people who still have children. So it's very important.
Thanks, Veerle. Now let's talk about the process of how you both got diagnosed. Was this a time consuming, perhaps a frustrating experience, Estelle?
Yeah, definitely. It took me some time to get my diagnosis and I did encounter doctors who told me that the symptoms I was reporting could have no link whatsoever to my hormones. You know, I was told that that's impossible, what you're describing. There's no way that can be linked to your period. I was told the symptom I reported was absolutely normal when it clearly wasn't. So there has been this kind of history, let's say, of women not being listened to or being perceived as plaintiff. And then what you're finding is you're reporting important information that gives the healthcare provider clues as to what's going on inside you, and it's written off as sort of attention-seeking behavior. I did experience that. I would say it's kind of like a kind of patriarchy in medicine, but it's not only from male doctors. It's more like a culture of patriarchy that exists.
Yes, same goes for me. I was going through divorce at the time of my diagnosis, so "it was all in my head" and it was because of stress and I shouldn't exaggerate. You know the words that you get to hear at that stage. Yeah, it's something you have to deal with.
And Veerle, has progress been made with regard to diagnosis and treatment for Parkinson's disease?
Well, we know the Michael J. Fox Foundation found a biomarker, which makes us now diagnose earlier to realize that we still have a illness which has no cure. But on a technical level, there are advances with regards to the brain's simulation, which I have, which kind of freezes the symptoms for a few number of years. So that's good. There's more studies being done into the impact of food, of diets, which might help a person. There's more and more evidence of the benefit of exercise. But there are progressions being made, but I think all in all, I don't think it's one illness, only one cure. I think depending on pathologies, I think we will go to subdivision of several of, according to the causes, we go to subdivisions of the patients and according to that different medications will be found. In that effect also the genetic screening is very important. So there are causes being made of this, a lot of sensibility is put on a patient itself and it's not being taken on by the neurologist so that's a bit of a downside.
Thanks and Estelle, there have been some pretty significant developments with endometriosis, haven't there, in particular regarding diagnosis because before testing was almost impossible, wasn't it ?
Well, the biggest breakthrough I would say has been exactly in this, in the test, a diagnostic test, in that previously the way to find out if you had endometriosis was, well, we have to cut you open and look inside you, which when I first heard that felt almost medieval to me. There's been some development in using MRIs and ultrasound to some degree, but the biggest breakthrough I would say has been the development of a salivary diagnostic test, which was announced last year also in France. And it has apparently 98% accuracy. It's a micro, an miRNA test to look at genetic predisposition to what's in your saliva, the genes that are there. And I found this quite exciting because 12 years ago, I gave a saliva sample to an organization that was exploring exactly this, the genetic predisposition. So it's great that there is something like that that can also save people from unnecessary surgery.
Veerle, when you first got diagnosed, did you find there was help out there? Did you join support groups and that sort of thing? And did you find it was easy to find those kinds of groups?
Yeah, I Googled obviously my condition. So I came with the Flemish Patient Association. But yeah, I didn't really connect with the people there so I went on and luckily I got the chance so I heard of... I got into training and that was helpful for me to get acquainted with people who experience the same thing even though in a different illness, but the problems that they face are the same, the problems that young people with MS (Multiple Sclerosis), for example face, cystic fibrosis, the storyline is the same everywhere. And that gives me the power to keep on hoping because I'm now 13 years into my diagnosis. I've had brain surgeries in 2017. So I did everything I could to make the most difficult situation. But it's difficult that you go and hear a lot of interesting development, but it does not mean my everyday life. I've got four kids today, so I need to be on top form every day. And it's not always easy.
I agree with what Veerle said. There are these kind of uncanny commonalities between us as patients with quite different diseases. And I've also gotten a lot of support and inspiration also from other people like Dela. And even though we don't share the same disease, but I did get quite involved in the endometriosis patient network. And I learned a lot from them. and I gave a lot back over the years, and I developed quite a nice friendship network, I would say, with women who are going through the same thing, and we have a kind of understanding that we believe each other, that we trust what the other one is saying is true. And then we share tips and that kind of thing with each other on lifestyle, but also things like which doctor we recommend, and what treatments we're on and that kind of thing. That's helped me a huge amount, yeah. [Tom] : "Now you're both members of the Servier Patient Board. Veerle, what's this involve for you ?"
Well, if you get a diagnosis like Parkinson's, which has no cure, you just have to deal with it by yourself and there was a lot of frustration and a lot of anger and what patient advocacy or activism you has given me is a way to channel that frustration and put it into positive energy for others. The amount of online Facebook groups that I've started, I put patients into in contact with researchers. I've done Servier but I have been quite busy, basically with my full-time volunteering. It's given my life a new direction, a new "raison d'être". And very nice to have a, that was a good thing about Barcelona. You know, the month I finally met up with the people that I've known from working together with online, people from Japan, the States, South America, and seeing those finally for the first time in 10 years, it was an amazing experience, I must say.
And Estelle, what about you? And tell us about what patient advocacy has brought to you.
It started off, as I say, with this quite strong connection with the patient support groups and sharing of information and wanting to give that back and that honestly one thing led to another. I've also enjoyed, as Veerle said, this kind of international network of other patients and feeling part of a movement that is making the world a better place. That is, yeah like she said, a "raison d'être". That is kind of what it is. And for me, it's also developed. I've developed quite a lot of knowledge and skills. It's influenced my professional life. And I feel like, you know, then I'm bringing many different perspectives that of a patient, of being part of health system, of being an expert in patient engagement and being able to bring like the patient voice to the table in many different contexts. So it's really been a huge kind of educational development for myself.
Veerle, in your view, what is the role of a patient advocate?
I see patient advocates as translators between the scientific world and just your average person patient. It's our job to translate what's going on, to give hope. Because you often hear, I mean, there's no investment in neurodegenerative diseases like Alzheimer's and Parkinson's, but there is so much going on and there are so many people trying to help us and trying to find a cure and giving really their lives into finding a cure. So, I mean, people are just going by, diagnosed every day on an everyday basis, are not aware of that, so they get frustrated and being able to give that hope and to translate the knowledge that's out there.
So why do you think it's important that pharmaceutical companies should listen to patients?
I like to draw an analogy to say, if you were, for example, to be inventing an electronic violin, you would not just develop it and then give it to a violinist and say, yeah, we have the perfect violin for you. You would involve them from the beginning. You would say, "What is there on the market? What do you need? What's missing? Why is that? What's there not working for you? What would you like? What are your dreams?" And you would consult with them all along the way. exactly what should be happening with patients and it's happening increasingly and that, you know, scientists they've had this incredible expertise and knowledge in science and they've been focusing on things in a very scientific way like a target a molecule that will have this and that effect in the body um which they associate with the disease but if they were to you know stop and step back and say "Let me talk to a bunch of patients, let me hear about their broader experience" you we could actually give them ideas, sort of eureka moments where they could think, well, "Actually, let's tackle this disease from a completely different way. Instead of hormones, let's look at neurological messages or let's look at nerve transmission, whatever, however that works." It's like we can bring insights that may trigger new scientific ideas. [Tom] : "Now we're coming to the end of this podcast but before we finish, could I ask you both for your advice to someone who's going through what you've been through, perhaps someone going through a dark time. Veerle, what do you advise ?"
Well, just reach out to your peers, find someone who knows how you feel about what you've been through and just share. Just don't hide away, because it's an illness which has to deal with stigma. Oftentimes people just keep indoors and they don't come out. Just don't do that. Just reach out and just let someone know that you're not feeling okay. Do what you enjoy doing and keep doing it as much as you can because that gives you... that boosts your dopamine. So that's quite helpful.
And Estelle, can I ask for your parting advice?
Believe in yourself and sort of accept yourself, your limitations with some grace as well. To be kind to yourself in your limitations, to have a kind, compassionate inner voice.
Well, thank you so much for that parting advice. That's all we've got time for. Thank you very much indeed, Estelle and Veerle, for being so generous with your time and for sharing those very personal experiences. I'm sure your testimony will be insightful and inspirational to people who are listening. We wish you the very best.
Thank you very much for having me.
Thanks, Tom. And thanks to those of you who are listening to this podcast.
And thanks again to both of you. And thanks to you for listening. We hope to have you with us again very soon for another edition of Patient's side of the story. Patient's side of the story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
Description
In our podcast "Patient's Side of the Story" we're speaking to Estelle and Veerle : two women, two stories, two journeys that they are generous enough to share with us today. They are currently working as part of the 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
(Voiceover) 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. This is a series of podcast, which is the result of 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 take patients'perspectives into consideration at the new Servier R&D Institute at Paris-Saclay. And these podcasts are an illustration of how we really are listening. Today we're speaking to Estelle and Veerle, who've both got very different stories to tell. But as you will hear as they share their experiences with us, there are some parallels that can be drawn. Thank you very much indeed for taking the time to talk to us. Welcome to both of you.
Hi Tom.
Hi Tom, thanks for having us.
Thanks again for being here. Could you just start by introducing yourselves and tell us about your condition? Estelle, perhaps you could kick off.
Yeah, my name is Estelle. I am an endometriosis patient and endometriosis is quite a poorly understood disease, although it's quite common. It's about 10 to 15% of girls and women to have it. It's misunderstood to be a menstrual disease because one of the symptoms is pain during menstruation. But in fact, it's much more than that. It's a systemic inflammatory disease in which these endometriosis cells, they grow all around the pelvis, kind of even up to the lungs, and they create pain, inflammation, they create kind of fibrosis, ropey tissue that damages organs in the body. And there are a whole plethora of symptoms, pain and fertility, pain with intimate functions, so that's bowel movements, the bladder with sex, and fatigue, bloating, migraines and so on. So it's quite a debilitating disease, but because it's related to menstruation, it's surrounded by stigma and taboos.
Thanks, Estelle. And Veerle, can I ask you to introduce yourself as well?
Sure, Tom. I'm Veerle. I live in Belgium. I'm a mom of four kids, and I've been diagnosed 13 years ago with Parkinson's, which is a common disease. It's one of the fastest-growing neurological conditions at all. at the moment, but it's quite rare if the onset of the disease takes place when you're only 45, then it becomes a rare condition. And actually, we do not produce the pulmonologic neurons anymore, which means that the communication between our brain and our functioning, every muscle, does not work anymore. So, yeah. And it affects, they say it's mostly tremor or stiffness, but it affects every part of your body. As Estelle also said, it causes bladder issues, every function in your body, the digestion. is affected by it. And because the medication and the disease itself affects behaviour and causes behavioural problems, it causes a big stigma around the illnesses.
Veerle, how are you feeling today?
I just went down with Covid, so I see she's a bit slurred, but I'm OK generally. Thank you for asking.
And Estelle, what about you? How are you feeling?
I'm feeling quite well. I mean, I must say that my well-being is a result of having had expert care for endometriosis and having had surgery with an endometriosis specialist and really setting up my life to accommodate my limitations and setting up a very, very good network of health care providers. Yeah, it's a work in itself to be well.
Yes, same goes for Parkinson's. I mean, we kind of self-manage our condition quite. We have to because we only see our neurologist like twice a year for 15 minutes, half an hour. And it's up to us, you know, to consider healthy meals, exercise a lot. Because all those little things help, but it's part of multidisciplinary care which is not provided yet in all countries. So we kind of have to be on it to keep control over the condition. I think in that respect, Estelle's condition kind of relates in the same way.
So you mentioned there's a bit of a stigma, but people are talking more about endometriosis than they were. Women's health, menstruation are much more discussable than they were, say, 10 to 15 years ago, aren't they?
Most definitely, and that's very positive and not just because taboos are unhelpful in and of themselves. The breaking down of taboos and stigma around endometriosis actually can help women get diagnosed earlier because if we're talking about it, if people understand what the symptoms are and so on, girls will say to each other, "Hey, I heard about this.", or they'll say, "Maybe that's what I've got", and they'll go and perhaps ask about it and get a diagnosis which can then drop it, reduce it by years. and win you years of a kind of practical help and engagement. So that is really important. I guess you will have seen in France that there was a national strategy introduced in 2022 to tackle endometriosis, in which Macron said it's not a women's problem, it's a societal problem, which is great. And then Spain is the first European nation to have introduced the law, enabling women to take paid leave for severe period pain. And that's just one month ago, it was June. So all of this helps to promote awareness and destigmatization. And that's great. And I see that also in my personal interactions. People have come to me and said, "Oh, I think I get now what you've been going through. I think I finally get it." And that's great. But it's taken a lot of work from the patient community to do that awareness raising too.
Veerle, I know you've got a totally different condition, but can you draw any parallels from what Estelle has just said in terms of awareness, public perception, and the conversation surrounding Parkinson's? Does anything she said sound familiar?
Yes, it's so important. I was just at the beginning of July, I was at the WBC, the World Park School Conference, which was held in Barcelona. And it was for the first time, it was actually a group of women with Parkinson's and it's the first time ever that the focus is on the impact that the hormonal cycle has on the symptoms. And the thing that happened and being... I mean it's such a huge item and it's being discussed, it's so majorly important for us young women because there are people who still have children. So it's very important.
Thanks, Veerle. Now let's talk about the process of how you both got diagnosed. Was this a time consuming, perhaps a frustrating experience, Estelle?
Yeah, definitely. It took me some time to get my diagnosis and I did encounter doctors who told me that the symptoms I was reporting could have no link whatsoever to my hormones. You know, I was told that that's impossible, what you're describing. There's no way that can be linked to your period. I was told the symptom I reported was absolutely normal when it clearly wasn't. So there has been this kind of history, let's say, of women not being listened to or being perceived as plaintiff. And then what you're finding is you're reporting important information that gives the healthcare provider clues as to what's going on inside you, and it's written off as sort of attention-seeking behavior. I did experience that. I would say it's kind of like a kind of patriarchy in medicine, but it's not only from male doctors. It's more like a culture of patriarchy that exists.
Yes, same goes for me. I was going through divorce at the time of my diagnosis, so "it was all in my head" and it was because of stress and I shouldn't exaggerate. You know the words that you get to hear at that stage. Yeah, it's something you have to deal with.
And Veerle, has progress been made with regard to diagnosis and treatment for Parkinson's disease?
Well, we know the Michael J. Fox Foundation found a biomarker, which makes us now diagnose earlier to realize that we still have a illness which has no cure. But on a technical level, there are advances with regards to the brain's simulation, which I have, which kind of freezes the symptoms for a few number of years. So that's good. There's more studies being done into the impact of food, of diets, which might help a person. There's more and more evidence of the benefit of exercise. But there are progressions being made, but I think all in all, I don't think it's one illness, only one cure. I think depending on pathologies, I think we will go to subdivision of several of, according to the causes, we go to subdivisions of the patients and according to that different medications will be found. In that effect also the genetic screening is very important. So there are causes being made of this, a lot of sensibility is put on a patient itself and it's not being taken on by the neurologist so that's a bit of a downside.
Thanks and Estelle, there have been some pretty significant developments with endometriosis, haven't there, in particular regarding diagnosis because before testing was almost impossible, wasn't it ?
Well, the biggest breakthrough I would say has been exactly in this, in the test, a diagnostic test, in that previously the way to find out if you had endometriosis was, well, we have to cut you open and look inside you, which when I first heard that felt almost medieval to me. There's been some development in using MRIs and ultrasound to some degree, but the biggest breakthrough I would say has been the development of a salivary diagnostic test, which was announced last year also in France. And it has apparently 98% accuracy. It's a micro, an miRNA test to look at genetic predisposition to what's in your saliva, the genes that are there. And I found this quite exciting because 12 years ago, I gave a saliva sample to an organization that was exploring exactly this, the genetic predisposition. So it's great that there is something like that that can also save people from unnecessary surgery.
Veerle, when you first got diagnosed, did you find there was help out there? Did you join support groups and that sort of thing? And did you find it was easy to find those kinds of groups?
Yeah, I Googled obviously my condition. So I came with the Flemish Patient Association. But yeah, I didn't really connect with the people there so I went on and luckily I got the chance so I heard of... I got into training and that was helpful for me to get acquainted with people who experience the same thing even though in a different illness, but the problems that they face are the same, the problems that young people with MS (Multiple Sclerosis), for example face, cystic fibrosis, the storyline is the same everywhere. And that gives me the power to keep on hoping because I'm now 13 years into my diagnosis. I've had brain surgeries in 2017. So I did everything I could to make the most difficult situation. But it's difficult that you go and hear a lot of interesting development, but it does not mean my everyday life. I've got four kids today, so I need to be on top form every day. And it's not always easy.
I agree with what Veerle said. There are these kind of uncanny commonalities between us as patients with quite different diseases. And I've also gotten a lot of support and inspiration also from other people like Dela. And even though we don't share the same disease, but I did get quite involved in the endometriosis patient network. And I learned a lot from them. and I gave a lot back over the years, and I developed quite a nice friendship network, I would say, with women who are going through the same thing, and we have a kind of understanding that we believe each other, that we trust what the other one is saying is true. And then we share tips and that kind of thing with each other on lifestyle, but also things like which doctor we recommend, and what treatments we're on and that kind of thing. That's helped me a huge amount, yeah. [Tom] : "Now you're both members of the Servier Patient Board. Veerle, what's this involve for you ?"
Well, if you get a diagnosis like Parkinson's, which has no cure, you just have to deal with it by yourself and there was a lot of frustration and a lot of anger and what patient advocacy or activism you has given me is a way to channel that frustration and put it into positive energy for others. The amount of online Facebook groups that I've started, I put patients into in contact with researchers. I've done Servier but I have been quite busy, basically with my full-time volunteering. It's given my life a new direction, a new "raison d'être". And very nice to have a, that was a good thing about Barcelona. You know, the month I finally met up with the people that I've known from working together with online, people from Japan, the States, South America, and seeing those finally for the first time in 10 years, it was an amazing experience, I must say.
And Estelle, what about you? And tell us about what patient advocacy has brought to you.
It started off, as I say, with this quite strong connection with the patient support groups and sharing of information and wanting to give that back and that honestly one thing led to another. I've also enjoyed, as Veerle said, this kind of international network of other patients and feeling part of a movement that is making the world a better place. That is, yeah like she said, a "raison d'être". That is kind of what it is. And for me, it's also developed. I've developed quite a lot of knowledge and skills. It's influenced my professional life. And I feel like, you know, then I'm bringing many different perspectives that of a patient, of being part of health system, of being an expert in patient engagement and being able to bring like the patient voice to the table in many different contexts. So it's really been a huge kind of educational development for myself.
Veerle, in your view, what is the role of a patient advocate?
I see patient advocates as translators between the scientific world and just your average person patient. It's our job to translate what's going on, to give hope. Because you often hear, I mean, there's no investment in neurodegenerative diseases like Alzheimer's and Parkinson's, but there is so much going on and there are so many people trying to help us and trying to find a cure and giving really their lives into finding a cure. So, I mean, people are just going by, diagnosed every day on an everyday basis, are not aware of that, so they get frustrated and being able to give that hope and to translate the knowledge that's out there.
So why do you think it's important that pharmaceutical companies should listen to patients?
I like to draw an analogy to say, if you were, for example, to be inventing an electronic violin, you would not just develop it and then give it to a violinist and say, yeah, we have the perfect violin for you. You would involve them from the beginning. You would say, "What is there on the market? What do you need? What's missing? Why is that? What's there not working for you? What would you like? What are your dreams?" And you would consult with them all along the way. exactly what should be happening with patients and it's happening increasingly and that, you know, scientists they've had this incredible expertise and knowledge in science and they've been focusing on things in a very scientific way like a target a molecule that will have this and that effect in the body um which they associate with the disease but if they were to you know stop and step back and say "Let me talk to a bunch of patients, let me hear about their broader experience" you we could actually give them ideas, sort of eureka moments where they could think, well, "Actually, let's tackle this disease from a completely different way. Instead of hormones, let's look at neurological messages or let's look at nerve transmission, whatever, however that works." It's like we can bring insights that may trigger new scientific ideas. [Tom] : "Now we're coming to the end of this podcast but before we finish, could I ask you both for your advice to someone who's going through what you've been through, perhaps someone going through a dark time. Veerle, what do you advise ?"
Well, just reach out to your peers, find someone who knows how you feel about what you've been through and just share. Just don't hide away, because it's an illness which has to deal with stigma. Oftentimes people just keep indoors and they don't come out. Just don't do that. Just reach out and just let someone know that you're not feeling okay. Do what you enjoy doing and keep doing it as much as you can because that gives you... that boosts your dopamine. So that's quite helpful.
And Estelle, can I ask for your parting advice?
Believe in yourself and sort of accept yourself, your limitations with some grace as well. To be kind to yourself in your limitations, to have a kind, compassionate inner voice.
Well, thank you so much for that parting advice. That's all we've got time for. Thank you very much indeed, Estelle and Veerle, for being so generous with your time and for sharing those very personal experiences. I'm sure your testimony will be insightful and inspirational to people who are listening. We wish you the very best.
Thank you very much for having me.
Thanks, Tom. And thanks to those of you who are listening to this podcast.
And thanks again to both of you. And thanks to you for listening. We hope to have you with us again very soon for another edition of Patient's side of the story. Patient's side of the story.
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
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