“That's not a Black disease” - Malone Mukwende talks about stigma and exclusion

For this week's episode of the podcast, Lucy speaks with Malone Mukwende who is the founder of the platform BlackandBrownSkin.

After his arrival at medical school, Malone became acutely aware of the lack of clinical teaching provided about conditions as they appear on patients with darker skin. This lead him to write the handbook 'Mind the Gap', a clinical handbook of signs and symptoms in Black and Brown skin.

Listen to what Malone had to say about his journey so far and how he feels about his work being picked up by the likes of Sky News and the Washington Post.

To download 'Mind the Gap' visit the website here.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Transcript

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Welcome to The Rare Disease Podcast., this is your host Lucy and today I am joined by Malone Mukwende. Malone is an award-winning medical student and the co-author of Mind the Gap, which is a clinical handbook of signs and symptoms in Black and Brown skin. This handbook has revolutionized the health care space. It's reached over 500,000 people in more than 170 countries. It was Malone's own experiences at medical school. That led to him developing this clinical handbook for Black and Brown skin. He saw the problem because he didn't see himself represented in his own medical learning. And he decided to do something about it. I'm not sure that he necessarily realized how many people were crying out for this and where it would take him. Malone continues to be an advocate for culturally competent healthcare for Black people and people of color. And I was so lucky to speak to him and to understand more about his journey so far and where he sees himself going. Enjoy. Hi Malone, how are you doing? I'm doing good, how are you doing? I'm very excited to be here with you, as you already know. But I've just done a really fancy intro for you, but I was wondering as you sit there in your lovely grey hoodie, I'm guessing at home, Who's Malone apart from being a superstar? So I would say like every single time I introduce myself, I've got into the habit lately of introducing myself by the things that I enjoy doing as opposed to what I do. So like what I enjoy doing is I really enjoy building stuff. I really enjoy that process of like thinking of a problem, thinking of like what are the first principles, how can we solve this and just building something like that's like my favorite stage of the process of anything. I also like football. So I'm an Arsenal fan. I really like music. Probably my, when my Spotify ranks comes out this year, it wouldn't surprise me if like, Amapiano, which is like South African house music. If it's not number one, I'm going to be like in shock. Like, how was it not number one? And yeah. And then I guess. The part of the work that I do do so like your LinkedIn, who is Malone I do a lot of work around improving healthcare specifically for Black and people of color, because I feel like they were left out of medical textbooks, left out of medical education. And then when we look at kind of the health inequalities that exist today it's like we, we are just exacerbating this problem if we don't get in at some point to stop that cycle going around. I love that. I like that you introduce yourself by things you like. I think probably not that, , surprisingly, I think I have that kind of. wanting to problem solve and build something. Thing in common, considering essentially how we are both sat here today talking to each other is because we both decided to do something while at medical school that other people didn't do. We can talk later about whether we're glad we decided to take those steps. But yeah, that problem solving thing. I will say I love computer games, but I think that I don't know if that came, it's chicken and the egg. Is it that that came before the problem solving thing or is that because computer games are essentially problem solving? I don't know. Who knows? What would you say is your favorite game? Oh, don't. Too many. At the moment I'm playing at the moment I'm playing Two Point University, which is which is like Theme Hospital that I used to play when I was younger. I've never played that game but I'm not a computer game person myself. Love Zelda, love Mesa. I, my daughter just recently downloaded SpongeBob SquarePants, so that's embarrassing. But yeah, I do other things. I, I really like history. I really, really find the finding why we do things now because of stuff that happened too bloody long ago for us to still be doing those things now is really important to me. So I think that also comes into kind of what we're going to be talking about today. Yeah, there's a lot of parallel overlap between us. The reason I specifically got in touch with you was because Medics for Rare Diseases had taken part in a NICE consultation. So anyone who doesn't know what that is, instead of us wasting precious time in this podcast, go listen to the previous one and you can find out what that is. But it was about a condition called adrenal insufficiency, where one of the cardinal signs that we get taught at medical school is hyper pigmentation. So as in there's more pigmentation of the skin when you've got Addison's disease or adrenal insufficiency. And, one of the things we pointed out in this NICE consultation is that we know that, , from research that has been done and the work of people such as you, Malone, that healthcare professionals, regardless of their own skin color, have not been taught how to look for or what presentations on Black or Brown skin might look like. So most textbooks I had, most, most of the people that we would examine at university , had White skin. And that's where you get the majority of the pictures from to learn from. And so when we received the results of the NICE consultation and NICE had decided to include a statement about looking out for skin signs and how to do that with people who have Black or Brown skin we were quite excited that that had been picked up and I got in contact with Malone. Yeah. And I think it's, for me, it was A lot of like I get a lot of messages from various people who are working on different things, but it's very rare for me to get messages of people who have kind of like done stuff. Usually I hear about things at the very early stage or the idea stage, but to see it out through to completion is like super rare. So when I saw that I was like, Oh my God, like, This is so cool. And initially I did have a bit of doubt in my mind, which is why I asked for like, can you send me the link? Because it almost sounded too good to be true. And it's a good thing that it is almost too good to be true. Well, it is true now because it shows you like how many leaps and bounds that I know various people have been on. I know, I can just imagine the work that you went through behind the scenes just to get something, even though it was like one or two sentences in the guidelines, but those one or two sentences can impact. 50 million people roughly in the UK, which is massive. Well, you're giving me goosebumps now. So I, yeah, it was an interesting one because we were obviously coming from the point of view of we're medics for our diseases. So you could be like, what's this got to do with you? We can get into the into intersectionality, as pointed by Kimberley Crenshaw later on, but it has a lot to do with rare conditions because a lot of people, you know, the global majority is not White and and actually rare conditions present in everybody. And so therefore being able to understand different health inequalities is really important. But actually, we went into it about adrenal insufficiency made all of these recommendations and the ones that were picked up, none of them was specifically about rare or genetic conditions. But that's the point is they will all benefit people with rare and genetic conditions because nobody is one thing. So I've got so much to say just on what you just said, but I don't want to take up the time. So could you please tell me the origin story of Mind the Gap for our listeners? Yeah, so origin story started with me in first year of medical school, and like every medical student under the sun, every single condition that we were taught, I thought I had it, but my problem was, I would see these conditions, and think that I have them from the description, but then when I look at a picture I'll be like, oh surely not, like I could never get that, or I can never get this, I could never get that, and then just from knowing like perceptions of healthcare within my own community, it's like there's certain conditions and stigmas which is like, oh no that's, that's not a Black disease, like Black people don't get that, and you kind of saw that at the start of COVID as well when people were like, oh, Every single person that has died so far with COVID, none of them have been Black, so you cannot get it. And then it's almost like the scale tipped completely in the opposite direction, where everyone who got, then died of COVID maybe like two months later, I think it was like 75 percent of them were from Black, Asian, or minority ethnic backgrounds. But, going back to first year of medical school, I then realized that actually, like, why do I feel like, Why do I adopt these views of, like, people in my community as well? They have those views because they're not in the medical system. I am close to the medical system as a first year student, and I'm still adopting those views, and it didn't make sense to me. And at first I thought, surely someone has figured this out. Like, to me it was, like, glaringly obvious. And I thought, oh, like, this is just common sense. Everyone has different color skin tone and things were not going to look the same. So I started asking like older doctors, older students at uni. And what I was finding was there was a different answer every single time. So if I asked let's say a consultant what does meningitis look like on darker skin? They would give me one answer. But then if I asked like a reg or an F1 or a medical student, all of those people give me a different answer. But if I asked them, what does meningitis look like on like White skin? It was just bog standard textbook definition. Everyone's just churning it out. And for me, it was like, well, why is this the case that the definition is a difference in all we've changed is. skin tone. So then I decided, okay, I want to do something about this. The other part of this story was I didn't actually enjoy first year of medical school. Yeah, I think first year of medical school was just like a baptism of fire for me. I just found it extremely difficult, didn't have time to enjoy myself because I was always like, drowning with work, and One of my mantras for second year was I need to do something that I know is gonna bring me joy, which is like a relief from this work, because the work is never going to finish. And for me, that's always been building things, creating things, kind of like the more entrepreneurial hat that I wear. And then I happened to come across like this random idea, that I had in first year, which is like healthcare for skin of colour, basically. Like everything that we got taught in first year. I don't think I saw a single image in first year of any condition on darker skin, unless it was stereotypically an STD. That was the only time it ever got mentioned. Yeah, unless it's like HIV or something, or Yeah, and I think obviously, when you don't see yourself in the curriculum, it's glaringly obvious, but I'm sure to the other students, they never noticed it, because I'm sure if it was in reverse, I probably would not have been quick to catch on to that. So then we get to November 2019. I start this project with two members of staff at my university. We were essentially on a mission to improve the clinical skills department at my university and that was it. Like we didn't have any plans of a book, a podcast, or literally nothing. It was just create some information sheets for the clinical skills department at university. It's kind of like an SSC, like a student selected component. Yeah, to an extent. But you were doing it kind of on your, off your own will. Yeah, so there was a grant that was available at my university. And I just applied for that because it was something to do kind of and that's kind of the catalyst that got us going and then obviously three, four months into the project COVID hit. And. One thing that COVID showed me was the fact that all of the discrepancies in healthcare just basically came to the surface. And to me, it was like, like, why are different populations dying at different rates? Why are certain groups of people being told you should isolate because you're more vulnerable, but this group is not as vulnerable. So that's where I kind of started to learn about all of these health inequalities. And during that time, whilst COVID is causing chaos in the early days. I knew that I have this like book on my laptop. I, it was just sitting on my laptop. So then one random day I decided that actually what I'm going to do, I'm going to create a Twitter account. I'm going to get my friends to respond to the tweet that I'm going to put out. And then I'm going to take that back to my uni to say, like, look, loads of people want this book. And in the process of that mini experiment, it spiraled out of control for positive reasons. And the next morning, like, John Boyega had retweeted it. And then, like, ITV News had caught onto it. Just so many people caught onto it in like 24 hours. And yeah, I guess the rest was kind of history from there. You went viral over something positive that will change the world in a positive way. Has anyone ever gone viral over something so positive? I don't know that they have. Yeah, I'm glad it wasn't for negative reasons. It's the panic, isn't it? You've gone viral. This could go one of two ways. The book is called Mind the Gap, a Handbook of Clinical Signs in Black and Brown Skin. And I'm just going to read a bit of the forward, which says, the aims of the project were to highlight the lack of diversity in medical literature and education. And You also say, we acknowledge that the problem could not be solved overnight. We hope to follow on from this work and update additions, which get bigger and better. What I find really interesting in that is it's a handbook. So people are using it. And even here, the aim was just to highlight the lack of diversity. You're not, you're just trying to raise awareness. How did it feel to go from I'm just trying to get the university that I am studying in to acknowledge that I do not see myself represented in the subject I'm studying. So this is something you're doing to sort of raise that awareness to, overnight, you are now the person to consult on this. That's a good question. I think initially I just embraced all of the traction, all of the doors that were opening, and I didn't actually say no to many things, I just said yes to absolutely everything that came. There was positives and negatives as a result of that, but I think how it felt initially it felt very scary because i always felt like i wasn't qualified enough to talk about anything and i think that comes from i think there's this culture within medicine of like almost like infantilizing med students and like junior doctors, like, like people who have just started. In some cases, I do agree that the more clinical experience you have, the more qualified you are to talk about it. But at the time I was like, well, consultants can't answer my questions. So I don't necessarily think just because they're a consultant, they're qualified to talk about it. Yeah, can I, can I like that really resonates with me? Because I used to hold back. So I had this upbringing around people living with rare conditions all the time. I'd, you know, I'd done data collection for what became clinical trials. I'd done care for people. I'd seen children look after their own siblings with gastrostomies and tracheostomies and everything. And suddenly I got to medical school and you're just put down at heel. And none of that, none of that experience you've had is taken into account. And yet Someone who has no experience can be your superior. And not only that, but you have to swallow what they're telling you. And I think when I started doing stuff about rare disease, it was only ever to highlight the problem. And then when suddenly you realize that people and now asking you to solve the problem that you've highlighted and you're like, Oh, okay. I can't do this. Surely there are better people than me to do this. Like, I don't know. I'm not qualified enough. I'm now like 10 years into this and I worked out not long ago. Not that long ago. No, really, I am the most qualified person to do this. Yeah. And I love that. I love, I love how bold that statement is. Because I was literally about to say like, Sometimes the most qualified person to talk about stuff is the person who is talking about the stuff. Yeah. We like to associate like a title or like a PhD or like a master's as a qualification. But if you have done that groundwork, that 10 years plus the years before at med school, just even just being interested in the topic, you will probably know one or two things that Someone who went and read it in a book will never, ever know. Yeah, absolutely. I heard you talk about something that, again, I related to you on the podcast that I think ties into this is, okay, so you get past that point of, oh, wow, like, this is actually really resonating with people and it's you know, you're being interviewed and everything to the point where now you've got a platform and people are just asking from you. they want from you, right? And they're often with nothing, giving nothing back or to solve their problems for them. And so then the burden goes back on the person who's already facing the challenges and already marginalized. You then become this person. I'm kind of asking, this is how I felt. And I wonder if it's true for you. I also work with a lot of people who work in the realms of racism and sexism education and that thing of people coming to you to ask for, ask you for solutions rather than doing their own homework and doing something, especially as you said at the beginning, that you had to make sure it was true that someone had actually followed through on something. So clearly there's maybe an instinct there that people often come to ask you about something or have a chat with you but whether they're actually going to follow through is a completely different thing. Yeah that's actually, it sounds weird to say it's a pet peeve because then it sounds like I have like a superiority complex and no one can ever ask me questions when obviously I would have from someone else as well but I think the point where it becomes a pet peeve for me is like, I don't like that feeling of having a transactional conversation where someone's just wants to have a conversation, I don't know, they might be doing like a dissertation for instance, and they just want to ask, ask, ask, ask, ask. especially when I can see that they've done no like research or like groundwork of their own because to me it's like if you were really and truly interested in this topic you would have came with a bit of background reading or background knowledge or some form of interest and then it feels like we're having a conversation that I can also learn from them from. It feels like I'm just sitting there spearing out some of the things that I've learned along the way. It just feels very transactional and it doesn't feel genuine and Yeah, I don't like interactions that don't feel genuine. Yeah, I totally, yeah. I mean, I totally get that. I think in this, when you've been in some kind of activism or advocacy role for a while, you can often get that sense of like, What do you really want? Like a bit of side eye, what does someone really want to get out of this? And then and then, you know, or if people come to you with something quite basic, and again, this is not about being up yourself, but you know, if I wanted to go and find out a lot about why AI is apparently going to change the world, I could just shout into Twitter and get 6, 000 people telling me why AI is going to change the world. There's a lot of those and they can all bear the weight of that question. Whereas when you're one of the few people who is publicly educating or advocating for something, it means that people might, you know, they're coming to you, people are coming to you all the time and you're a precious finite resource yourself, like you can't just give and give and give, can you? Yeah, it's not about superiority. It's just about resource management. Yeah. And I think even just the value of your time, like, like I said, at the start, I used to say yes to absolutely every single opportunity. I didn't actually have a particular value on my time as I've kind of grown older and further along the journey. It's like now I have an internal value on my time. And. I think it helps you to not get distracted and to keep focused because there are some things which I think if you just said yes to absolutely everything you end up getting in a point where you've helped the world but you haven't helped yourself and I think what help are you if, if I haven't helped myself and I can no longer carry on like what was the point? Yeah. Yeah. I, I I know what you mean. I sometimes have struggled that I struggle with it less now, but I used to sort of feel like if I don't do this, what if it's the one, you know, what if it's the one clinician that could make a difference to that family's life? Or I know it sounds, you know, and it's not about me. It's about when you're, when you are the person who is doing a lot of the legwork. Then if, when you decide to say no, that can be quite difficult. I listened to your, your podcast episode with Dr. Khadija from melanin medics? Yeah. Oh, that's my friend. Oh, is it? Oh, amazing. Awesome. I mean, because she was talking about legacy and what is legacy. And she was talking about legacy to her is what you have, you know, What have you left behind and how you've made other people's people feel and that is so true But also that can be quite a lot of pressure, isn't it? Like you could just leave a little bit more of you behind but then there'll be none of you there Yeah, did I give an answer to what I thought legacy was? No, I don't think you, or I don't think you did in that section because I think you were then going on to talk about Melanin Medics and AKAYA. So , here we go. You didn't expect this to blow up as it did. How do you feel about what you do now? And where do you think your finish point is, or is it never finished? I would say like the person I am, I don't think I'll ever finish because I think things will just evolve and the goalposts will just continually shift. I think with regards to legacy, for me, I just want to know that I was able to leverage knowledge and skills that I had to improve lives for people that are close to my heart, if that makes sense. So what that means specifically is I think I've been blessed and grateful to have had loads of cool opportunities in my life that sometimes I look at if certain decisions didn't happen in my life, maybe I've been living a completely different life. One of the most obvious ones is if my parents didn't come to England. I don't think any of this even going to medical school, maybe even going to university, I don't think any of that happens. And it's just to say like, Now that I'm in these positions where I'm at a medical school in one of the biggest cities in the world, I think, London and having access to like the brightest minds of like our generation, kind of, I just want to know that I can be able to take that knowledge, build something which is transferable to people who I think are underserved. And also in the process, I guess, To have fun and to live a life that I don't have to rely on others. And by that, I mean, like, I don't have to rely on others. If I have ideas that I have to go and ask someone for permission to carry out my ideas. Or if I want to build something, I always have to get permission. To me, that's what a finish line would look like. If I get to a point where if I think the idea is a good idea and there is enough, I guess, like evidence financially, it makes sense. There is people around like a team, then it's good. That's the criteria rather than. some situations I've found myself in where I'm begging someone to understand that 4 percent of textbooks have diverse images and please can you give me permission to do this project so we can show representation like that really grinds my gears. I don't like that. Yeah, absolutely. Yeah. You're having to ask permission from people who will never understand the the potential power or benefit of doing what you're suggesting, but also the continued pain of not doing it. It's not a neutral decision. It's not like the status quo is acceptable. For, for anyone who wants to look after all of their patients in a dignified and equitable manner, the status quo is not acceptable. enough. And so therefore by turning Malone of Mind the Gap down. You are actively choosing against progress that probably the hospital, the university, whatever, has a policy somewhere in there about equality and diversity, where they're telling you you're meant to be doing stuff for. And I think there's that cognitive dissonance is, you know, it I, you know, I get, like, passionate, but the point is, it's really bad for people to experience cognitive dissonance. It's really, horrible to be told, Oh, this is happening. Oh, we are doing this. We are working towards this, but you actively know that you, you literally know from the horse's mouth, that stuff that would help that action is being turned down. That's something I find really hard in rare disease because, and I wonder if this if you feel this way at all, but people living with rare and genetic conditions. They're used to not having great truths. You know, they're used to hard times. They're used to dealing with challenges. They're used to dealing with some of the worst news you can ever have delivered. So don't pretend that it's going to be better. They can handle it. Just because you can't handle it and you don't want to admit that they're not going to get the best and they're, and you can't do that to help them. Don't pretend. Because do them the honor of just being honest, because believe me, they can take it. What people can't take is the pretense. Yeah, I like that. I like the way you phrase that, just do them the honor, because I think even in the work that I do, I wish more organizations or like more trust or more individuals were just more honest about whether or not they are for or against this stuff. I think the way the world kind of evolved since COVID, I think everyone has started to use like health inequalities as like a buzzword. And. It's almost like, there are certain trusts and organizations where I know 100 percent in their back rooms, they don't actually care, but from a PR, from a, what looks good, like, we need to look like we care about the people, talking about health inequalities makes so much sense. Because for me, it's like, a lot of these things are not rocket science, and even where they are rocket science, the reports and the theories and the studies have all been published. So I don't think we need to be in a position where we're scratching our heads trying to figure out what to do. We just need to do something and learn from our interventions rather than learning from like our theories. So I think a lot of the time you'll be doing the honor to those marginalized communities. By just doing the work, as opposed to, oh yeah, like, we're gonna recruit another hundred people to tell us why the experience of the NHS is poor. And oh yeah, like, next year we're gonna do the same study again, and next year we're gonna do it again. Like, people can see right through that stuff. Yeah, I, I obviously saw the phrase multiple sclerosis and clicked on it in your podcast. So the podcast with Natalie Basari, who is an advocate for Black people with multiple sclerosis. And she was talking about what you said earlier, she said that as well, that like, that she was told, oh, Black people don't have multiple sclerosis by people within her community. And one of the things that. I thought about that was that so date that so dangerous and as a societal thing, because if you know that the health care system is not reliable to provide accurate information for Black people and people of color, then if there are also then sort of accepted theories within composed communities, then someone can really miss out on health care because neither the community is pushing them to get there. to get the help for multiple sclerosis, but nor is healthcare necessarily going to be inviting them with their arms wide open. And it's the danger of people falling through the net then. And that's with multiple sclerosis, which is a pretty well understood condition. But she also talked about how she'd organized a, I think, uh, a meeting for people to talk about solutions for the community. And people got upset because it was just, she said, asking Black people again, what to do in this scenario. And that, like just sitting people down and saying, okay, we hear you have a problem. What should we do? And again, You know, that's the, that's the, RuPaul calls it stick with it ness, you know, you've got to align yourself to people who've got the stick with it ness to actually then see it through and do those things that like, you know, for example, Mind the Gap and everything you've done since. Yeah. I think the other aspects of that goes back to what I was talking about earlier about transactional relationship, where I think a lot of the community can feel like, please, I guess community engagement things. Like, it's very, like, transactional, like, these researchers or scientists or healthcare professionals just want to take, but we are not getting anything in return because our outcomes are still poor. When we go to the hospital, for instance, let's say someone with sickle cell and they have a sickle cell crisis. They are still facing the same challenges, same problems, but I am participating in all of these like engagement groups and I'm seeing no progress, which again might feel transactional to members of the community and then that's how you get people not engaging as a result. Yeah, it leads to loss of trust. Yeah, same in the rare community that, again, it's not a neutral action to just go and basically ask and ask and ask and then not do anything. Every time you access or you use a community's time, that's their precious resources. And if you use them up and you aren't going to do something golden with them, then that means that you know, they might not want to engage another time and good on them. They, you know, why would you, if you have a bad experience with like a shopping delivery company, you don't just keep going back, even though they don't change. Do you, you, you move, you move with your feet. And yeah, it's always like this kind of when people are in marginalized community is if you like, owe, people. to speak up or say things. I think in the rare community that's changed quite a lot. And I think a lot of people, there's a lot more empowerment in true empowerment, the empowerment where people have the choice to make decisions, not the empowerment where we allow people to talk. What would you say from the rare diseases community? And I guess superficially looking at some of the stuff that I've done. What would you say that, I guess, myself or someone who is I guess doing work aligned to me could learn from the rare diseases community. Gosh, what could we learn from the rare diseases community? I mean, I don't know what, I would hate to be so arrogant as to say what we could learn, but I think what we could do is align and is to understand that if, you know, because basically one of the issues with say what we're talking about here is basically systemic racism and that need to constantly Justify, improve, and experience it is happening all the time. And I don't, you know, I'm not trying to explain this to you, as a, as I'm a White person living in the UK, but I do quite a lot of thinking about it, because we've borrowed the phrase burden of explanation from anti racism teaching to talk about what, People living with rare conditions have to go through. So that continuous burden of explanation about what their life is like with a rare condition, even in healthcare. So they go for healthcare and people dismiss them. They say that, you know, they might say they're making it up. It's too rare. It can't be that, or they, you know, stigmatize or they give them sort of less optimal healthcare because they think, well, you know, it's rare. What do you, what we're going to do? So I think that. Being able to see the common challenges for the healthcare, the way that the status quo leaves people disadvantaged is really helpful. So that when we're thinking about health inequalities, we're thinking about people as individuals with that, within that intersectionality. So understanding that there's those Venn diagrams and within those Venn diagrams, there's always going to be someone who's impacted by lots of health inequalities. I don't know if I've said that very well. Yeah I mean what I'm taking away is like to say that just because you have a rare disease doesn't mean that is the only thing like there's a lot of intersectionality between having a rare disease, race, gender, sexuality that can all kind of stack on top of each other and potentially make your experiences completely different to somebody else even if you have a rare disease. The same rare condition. Oh, yeah. And, you know, I used to experience this when I was younger when within the charity I grew up, like in if and I, it's one of the things that really motivated me that when I moved out of, I basically grew up within one, you know, Condition area for one like group of conditions. So I'd seen what my mom as an English speaking White woman she, where she could get the room, she could get into the change she could make even in the eighties and nineties before. Social media. And then when I studied in East London, where there are, there's a lot of people who live with sickle cell in the area that I studied. And you start to realize my mom wasn't some saint or some kind of super human person. She had a lot of privileges that helped her get to that point. And I had watched. How this whole, you know, the condition my brother had has a treatment. Now, I'm not saying that the work is done there, but it shouldn't be that it takes one individual in the right circumstances to completely change the completely change the prospects for a population's health. And that's why Medics for Rare Diseases is broad and it's across all rare conditions because anybody accessing healthcare in the NHS has a right to safe, dignified healthcare that is competent based on their needs. Do you think in kind of trying to target all, do you think you leave other people behind or do you ever feel like there's people who don't feel seen because everyone's trying to be targeted? Because I know for a lot of the stuff that I've done in the past, sometimes some of the feedback that we've got is to say, like, oh, you say, for instance, for Black and Brown skin, but I am from Sri Lanka, for instance. But I don't feel seen within your stuff because it feels like all African and Caribbean people being represented. Like, do you ever feel like people give you that feedback or maybe they don't, I don't know. So I'm trying to think of the equivalent. Well, first of all, I'm, I, when I say we're for all, we're for equity. There are people who, there are groups of people who continue to have challenges, but they have a lot more out there supporting them. They don't need me, do they? You know, I'm useless in comparison for them, but they've got a load of other people who could do the job better. The point is that we're trying to go in, we're trying to get into a space where people who will be left behind with the status quo, they can come with us. So my rather, like, my thought is, if we can talk about personalized medicine in the NHS, so this idea that a person can have medicine that is sort of bespoke to their needs, so they get that we understand their metabolism or the pharmacogenomics of whatever the tablets they're taking, and we can make that as close to the best for them as possible. If we can do that for one person, personalized medicine, how come Black women die at a greater rate in pregnancy and childbirth? Because pregnancy and childbirth is not a rare condition. Nor is being a Black woman. So if we can do personalized medicine, why is it that huge swathes of the population continue to like have worse health outcomes? So within rare disease, you get this chance to challenge people, not just about rare, but every identity. because people will say, you know, they're there, they're turning up for the rare aspect, but then we're going to hit them with the, the rest of those identities because nobody is one person. Yeah. That's that sounds really nice. And I think the thing that I'm thinking about when you were saying that is to say, I think a lot of the time health care, health care kind of is designed in a way that it will always cater to 80 percent of the population. And there's always a 20 percent that's left behind. And I just think in that 20%, this is where people like yourself, and other people doing amazing work in this space kind of come in to fill the gap. And I think for me, it was just thinking to say like, Even like, for instance, throughout all of medical, I don't think we've, we've even been taught about rare conditions as, as like a group. Instead, it will be like, if you meet a consultant who happens to be doing some research on that condition, that's the only time things would get flagged up. Outside of that, it's like, you will never ever hear it mentioned. Can I just pause you there to say, if you're listening from the Department of Health, I just want to say I told you so. What did you tell me? Well, that, you know, because then everyone goes, Oh, we do teach about rare conditions. You're like, well, you teach about the genetics of this condition and you teach a lot about that condition, despite it being rare, but you don't teach anything about this. My one I go on about is I'm sure they still do them, but you know, hand signs of infective endocarditis. So like what are the Osler's nodes, Janeway lesions and stuff. Do you still have to learn about those? Yeah, I literally was revising that today. They are rare signs of end stage infective endocarditis. I'm not saying that we shouldn't be alert to rare, rare end stage signs of infective endocarditis, but why are we learning about those? And not presentations of skin conditions on Black and Brown skin. Why are we learning about those, but not the hand signs of far more common rare conditions? And it's that kind of idea that as if medicine has been designed when it hasn't, it's just grown. And I'll challenge you on the medicine's going to be for 80%. It's not. It's not for the 80%. And because I'm a woman, and I can tell you that it's not for women. And we're like, you know, 50 percent ish. And so we do this, we do this joke. I'm interested because of what you said about someone who was talking about being South Asian and feeling unrepresented. We do Rare Disease 101 training, where we teach doctors and medical students about the fundamentals of rare disease, like cancer. So, you can, you don't have to know about all of the rare conditions, just like you'll never know about all cancers. But we do have an understanding of what cancer is, and that helps us talk about it and design services. I I literally was just Googling your I literally wanted to find out, like, this training that you're talking about. Oh yeah, there's a whole online training for it, yeah. And so when we go to medical schools and stuff and we do presentations, we ask, you know, what is a rare disease? So anyone new who's listening, that's a condition that affects fewer than one in 2, 000 people. But that's the number and we talk about the rare disease experience. And the rare disease experiences. Not having the information, not being represented in textbooks, having clinicians not be able to answer your questions, not having any research, not having appropriate treatment, having your symptoms denied. I mean, some of these things are things that you spoke about as if being a Black man is rare. Yeah, I never thought about it like that. When you put it into words, it does make sense. From a female point of view, so what we talk about is you can be made rare. By society, because if they haven't collected your data, if they haven't done research for you, if they don't represent you in medicine, if they don't represent you in teaching, then you don't count, you're made rare. And so we talk about Davina McCall recently has raised a lot of awareness about the menopause. And I say, do you know what, what is a rare condition? Until recently, the menopause was a rare condition. Yeah. It has exactly those features of, you know, it's poorly understood, people get their symptoms denied, doctors can't help them, they might get access to treatment in one area but not another area, there's little research, little data. I think there is a long way to go, especially for like medical education, we have a, generally speaking, I think. There is a whole revamp that we could do in certain spaces, and it's just unfortunate, I don't know about you, but my experience with, I guess, the powers that be when it comes to medical education, is that it's almost like, it feels like it's too much effort for them to be able to, to implement these things, because, oh, well, we've done it this way for so long, why would we change now, and for me, I just think the essence of science is trial and error, you know. And the essence of science is things change and evolve and improve over time. So for us to be using this is how we've done things, this is how things have worked for all of these years. I just think it's cool. Yeah. And, and I will always mention the book, which I have right here. Divided. I love it. By Dr. Annabel Sowemimo, you don't Do you have yours on you right? Let's do it. Hang on. Let's try and take, I don't know if I can do this. Hang on. I think I've got like the skills to be able to take a shot and also do a screenshot. Hang on. I can do it with my phone. What we could do. I love it. We are like a fan club. Right. Amazing. But yeah, the need to decolonize healthcare. And this is for, we can have a whole other conversation about where people of color, marginalized people, people who have at some point in the world's history been seen as lesser, how they have been used in experimentation over time in research. And experimentation. And that's where I think there's some communities that if we join voices, , what holds us in common might not seem so obvious at the beginning, but actually some of our experiences are quite are quite similar. And then we can, you can start speaking up a bit more, you said another thing in that interview, when you went to medical school, it wasn't You said it wasn't what you thought it was going to be or something along those lines. And I think that's definitely how I felt. It, it felt quite disappointing that I thought I was going to be able to do something that I realized I couldn't do. But you're still at medical school now, aren't you? As well as doing a load of other things. So I, I graduated, I did three years of medicine and then I left because my life and medicine did not fit together. So. What do you do now? What do you see going forward? And that can be like, just sitting watching Arsenal. It doesn't have to be a big thing. It's just like, All right. I like to, I like to put stuff out there. Because I like to go back to conversations periodically to see what I thought at a particular time. It almost feels like time traveling for me. But just time traveling through like my memories. So what is next? I have about five and a half months to go until I finish med school. I'm not a hundred percent at the moment, what my career as a doctor looks like, but I am a hundred percent that I will be doing work in the realms of like the stuff that I've done with mind the gap. I'm also on a mission at the moment to build a hospital. Just because I met someone who has built a hospital and I thought this kind of. overlaps with the things that I've already seen with Mind the Gap and this is like the next big thing. So I know that I will 100 percent be on the journey to doing that like 10 years from now, but in what capacity does medicine fit in with that, I'm not 100 percent sure. And I think I just want to get to a point where, I just want to get to a point where I feel like for so long with a lot of the work that I've done with Mind the Gap, I have poured from our cup without ever filling it back up. And I think now a lot of my focus has been, especially this year, has been filling our cup first. Because like certain things happened this year and I was like, this is not sustainable. Like, I would want this to outlive me. And if I keep operating the same way I'm operating, like there is a limiting factor, which would just make this crash and burn. So, yeah, I think filling up that cup, metaphorically and yeah, just building a hospital, becoming a better man. And yeah, hopefully Arsenal will win the league at some point as well. I, yeah, absolutely. Make sure that you keep your cup filled. And we'll see. That I'm paid to do this job for the very reason I couldn't keep doing it as I was doing it as a doctor and it would have just broken me and sometimes did at times. And where are you building the hospital? So at the moment, the plan is to definitely do it in Zimbabwe, and eventually, if possible, to do a similar thing in the UK. And when I say hospital, I just mean a clinical building that healthcare can be delivered in. So, it doesn't necessarily have to be like, a guy's in St. Thomas Hospital in central London, but if it's even a community clinic. Yeah, a clinic. Yeah. Free blood pressure checks, like, to me that, the mission would have still been there, so. Do you have a particular beloved place in Zimbabwe that you're thinking about, or? I don't have a specific place in Zimbabwe, but if I had a specific place in England, I would definitely want it to be in South London. My last thought, and I have just, you know, you've already done so much, but I am a little bit older than you, and I've been a medic, but not a medic for a while, is just by being a doctor, as in having the word doctor in front of your name, you will get invited to things that the same person without doctor in front of their name would never get invited to. And that alone will be so powerful and beneficial for the cause that you're representing. And I often say I get invited to things because they think I'm a doctor and then everyone. panics because they realize that I'm actually an advocate. So I get under, I get invited into the room and then everyone's like, Oh God, who invited an advocate? I mean, you have already done amazing stuff. You've already inspired work that we've done. And if there's any, you know, let's just hope that this is the first of many conversations. And if at any point you need to, or anyone around you, needs an organization that might be able to take some of the load or, or share any of that, then we're always here in, in the capacities that you want us to be in. Yeah, and vice versa, if I can be of any help to you, just reach out to me and we'll be happy to help. Yeah, okay, awesome. It's a deal. Okay. Well, Malone, like, thank you so much again for your time. I know you're such a busy guy and this has just been an absolute pleasure and well done for everything you've done. Speak soon, hopefully. All right. Thank you so much. All right. Bye.