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From disability to advocacy for leprosy: neglected tropical diseases part 2
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This two-part episode shines a light on the lived experiences of two remarkable individuals affected by NTDs. We explore firsthand how disability influences and affects their lives. In part 2, host Garry Aslanyan speaks with Dan Izzett, a former civil engineering technician and pastor who has turned his retirement into a powerful mission advocating for people living with leprosy. Peter Waddup, the CEO of the Leprosy Mission in Great Britain, provides a thoughtful reflection on Dan's message and its practical implications for the global health community.
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Welcome to the Global Health Matters Podcast. I'm your host, Gary Slime. In commemoration of World Neglected Tropical Disease Day, we bring you part two of this episode that sheds light on the real and lived experiences of people affected by NTDs. We explore firsthand how disability influences and affects their lives. In this second installment, I have the pleasure of speaking with Dan Isit. Dan is a former civil engineering technician and pastor, and he has turned his retirement into a powerful mission advocating for people living with leprosy. Later in this episode, I'm joined by Peter Wada, the CEO of the Leprosy Mission Great Britain. Peter provides a thoughtful reflection on Dan's message and its practical implications for the global health community. Hi Dan, how are you today?
SPEAKER_04I'm doing great, thanks, Gary. Good to see you again.
SPEAKER_01Welcome to the show. Dan, your life has been affected by leprosy, one of the oldest so-called neglected diseases. Maybe you can start by sharing with our listeners your story briefly.
SPEAKER_04Thank you, Gary. I was born in Zimbabwe, formerly known as Rhodesia, in 1947. And I was diagnosed with lepromiso leprosy in 1972. Once I was diagnosed, I could actually trace my symptoms back to 1960. That was my first year at high school, was about the age of 13. But because of the incubation period for leprosy is about seven years. Some people even say a lot more. I assumed that I could have contracted the disease around about the age five or six. What was happening is I was losing the feeling in my hands. I went to a technical school. We did woodwork and metal work. And so I'd burn myself welding and get splinters in my hand and not feel it. But as a young boy, I just thought this happened to all young guys. You know, you've got more hormones rushing around your body than white blood cells, I think. And sort of putting it together to say this just happens to everybody, it's growing up pains. In 1967, I was called up to do military service, which was standard for us at that time. Our nation was in a civil war. And I went in for my normal GMO. And as I walked in, did my pirouette in front of the GMO naked, he looked at me and he said, Hey, what are those brown patches on your backside? I just replied to him, I said, Sir, I've never seen them before. Well, after military service, I then went along to dermatologist and had him have a look at them, which he decided was a fungal growth on my body. And so when I did the treatment, that was it. I never went back to him and just got involved with my work. I used to be civil engineering constructions, earth full dams. I was miles out in the bush, miles hours from anywhere. And then in about 1969, I moved, I stayed with these big dam constructions, and I moved to town and met my wife Babs 16th of December 1969 at 8 47 in the evening in the southeast corner of the Balfour Hotel, Rasar Pi Rhodesia. But anyway, we got married in August 17. In November, I came out in a rash all over my body. So once again, off to dermatologist, naked in front of the dermatologist, and he looked at me, he said, I know what's wrong with you. So I said, Oh, great, wonderful. What is it? He says, You've got syphilis, which was a bit of a shock because uh we'd we'd had a lifestyle which didn't allow me to do that, or I didn't engage in premarital sex at all. So anyway, he took a blood test and the blood test came back positive. I then had to go to my wife and tell her what the doctor had said, you know. Anyway, I was treated from 1970 right through to February 72 for syphilis, multiple doses of penicillin as it was then, and multiple injections, but the blood tests kept coming back positive, which wasn't very good. So eventually I was sent along to a consulting physician who immediately took me off all the drugs that I was taking and tested me and actually found that I was anesthetic to above my elbows, above my knees, and about 70% of my face. So he just said, no, I don't know what's going on. And I think sort of back then, the high level of medical inspection or investigation were spinal taps. And I had numerous spinal taps, there were just nothing wrong. Well, a few days later he called me, he said, Come in for a further test. I have another idea. So I said, Oh, great. So he took a scrape off my forehead, didn't tell me what form, but within the week I had a phone call, please come in and see the government GMO. We know what's wrong with you. So I said, Oh, wonderful, is it syphilis? So he said, No, but we can cure you. We have a cure. If you have Hansen's disease, what we know as lepromatus leprosy. Lepromatus was the highest level of bacilli in your body at that time. You can imagine what a shock it was to me. My life flashed in front of me in half a second, my future in the other half of the second. We discussed a drug regime and what the purpose of taking the drugs for. He opened up his big book and he said, We're also checking out on something else, which was a forerunner of what today is known as the multi-drug treatment. But high-level dosages, for example, I think today they take a drug, Rapamphhozin, and it's four tablets in a month. I was taking four tablets a day. So it was just an overkill on it, but we had there was no regime at that time. Anyway, it had the desired effect in destroying the bacilli and reducing the bacilli count, which was what we were after. Went through with that, and everything was fine. And then in 1976, I burnt my feet. I stood in a basin of hot water because I had cracks in my feet and wanted to get rid of the cracks, which I did do. But when I got home that evening, I said to Babs, my feet feel funny, took my shoes off, and I'd literally boiled both my feet from the ankles down, feeling boiling water with your hands, which are anesthetic, standing in boiling water with feet that are anesthetic. The end result is easy mathematics after that. Well, that infection lasted through three years of osteomolitis, multiple hospital trips, multiple years of just antibiotics, eventually had an amputation in 1980. There's just another little sideline over here. With Babs, eight years, seven, eight years into marriage, she's diagnosed with leprosy, so she must have contracted the disease prior to me even being diagnosed with leprosy. In 2012, I was diagnosed with a shark foot in my left foot. I was up for a second amputation. My physician back at home said no amputation. I said, What is the answer? Anyway, she said she'd saved thousands of shark feet with a system that she developed and put my leg in a plaster cast for 22 months and just loaded me with antibiotics. Well, I saved the leg. 22 months in the plaster cost, the bones were healed. I don't have a pretty foot, but I have a foot. And I think I've come to the conclusion one foot's better than none. Well, a finger amputated in 2020 after burning my hand, and then again a couple of years later, I've had a two toes amputated, osteomolitis. As a result of the neuropathy, I think, whatever it is, I've lost death. So that's briefly the history up to date.
SPEAKER_01Interesting. Thanks for sharing that. You present it in such a chronological and detailed way, and it one would think you're reading your uh medical records. So that was great. You've been looking into this disease because it affected you. But the world or the global health community knows this as one of the neglected diseases where we are giving more priority to this disease. But we still have, I mean, after all, neglected diseases are still with us and affect billions of people in everyday reality around in many countries. So, what does neglect mean for you and through the experience that you've just so nicely outlined?
SPEAKER_04It's easy to feel neglected, especially when you've had multiple investigations done on your body, questions, ideas which are thrown forward to you. You go down the route, particularly. I always think of the the first time when I was diagnosed or with supposedly syphilis and multiple treatments, and just positive and positive and positive for whatever reason. So it's easy to feel neglected or unrecognized. I think sometimes it's more unrecognized in your life. Um I think there's in the disappointments and the treatment and the wrong diagnosis and having to start all over again. I don't know how many times I've told my story from the beginning for somebody to try and get some new insight into it. I would also say inexperience in the nature of diagnosing leprosy is not a common disease, particularly in in Zimbabwe. It's a low endemic area, so it's not a common thing. And yes, we had one day's training on it, but we've never experienced it. In my case, the delay of diagnosis caused further complications and loss in my life.
SPEAKER_01Right, right.
SPEAKER_04And this is one of the reasons why we've been able to take this misfortune in our lives, and Babs is an early diagnosis, I'm a late diagnosis, and she has no problems, whereas I have multiple problems.
SPEAKER_01If I could switch quickly to another aspect of you suffering from the disease, you've told me you kept your diagnosis secret for 28 years. Why did you feel that was necessary, and how did the community around you react to it when you eventually shared that with them?
SPEAKER_04I think the first thing, particularly with leprosy, is the stigma of leprosy. It's a precast case, the stigma of leprosy, the movies that are put out, the pictures that the jokes are. Look, as a young man, I can remember telling jokes about lepers. You know. So there was that. Number one, the stigma, I think, without a doubt. Secondly, was the fear of being rejected by people. Um being ostracized. We are community people, so we felt very afraid of being rejected. Thirdly, because of advice from our medical advisors. Yeah, we're talking about back in the 70s of the medical advisors. There was not the great openness that there is to people speaking about diseases today. That's a very good thing that has developed through the time. But for us, it was no, keep it to yourselves, and more you can do. So it was only on a really need to know. Well, eventually we shared our story in the year 2000. Fear of rejection was erased when we took control of our lives and gave our testimony. It took us months to decide to give our testimony, it would tell our story. We had to straighten up our shoulders, raise our heads and look above what the crowd might think, to move ahead. And well, for us it was breaking new ground in our lives. You know, fear causes a person to be robbed of dignity, being robbed of self-worth. It actually fear manipulates a person without you even understanding. So in fact, stigma, which is real, there's real stigma and there's imagined stigma. Whatever it is, it traps a person, almost leaves you emotionally paralyzed at times. These imaginary or real boundaries are built around you. The imaginary one for us was that our community would reject us. The real one, there was a community that had built preconceptions, traditional, false ideas about the disease, particularly leprosy. So the the rejection that came about when we shared our story was totally nullified because we shared our story, and a lot of people came. We were ministers in a church. People drove two hours to hear Dan and Babs' testimony. They had no idea what it was. And at the end, everybody came, we wept, we hugged each other, they kissed us, and they said, Why didn't you tell us? We had one word, we were afraid. We never experienced rejection by anybody.
SPEAKER_01Interesting. Must have been very courageous and to get to that point. And of course, because of the disease, you also have physical manifestations of leprosy. Oh, yes. You lost your leg. I wonder if you think people around you label you with the word of disabled, and what part of that is part of your identity, or how do you perceive that? Is that how people would call you?
SPEAKER_04In my case, I have no problem with being called disabled because technically that is what I am.
SPEAKER_01Right.
SPEAKER_04And I think with self-acceptance, self-proclamation, self-declaration, it doesn't matter anymore that I'm disabled because that's what I am. In fact, I've actually been able to embrace my disabilities. And I actually use them to advance our advocacy role. I like to tell I'm a fat man with one leg, three toes, nine fingers, hopping to get to heaven one day, you know. So I've been able to embrace them and use them. I've made my disabilities part of my identity. It does help in our advocacy role. See, what we've done is we've taken whatever is negative, we've turned it into a positive. You can either live in the negative and you can choose to live there, build on it, or you can live in the positive. We've chosen to make it positively. Disability can also be called inability. Many people don't have a thing labeled as a disability, but they're unable to do some things. Not all disabilities are visible.
SPEAKER_01Another you already mentioned work you do with your wife, Babs, is turn your story into important voice and become real leaders in advocacy for leprosy. How did you feel both that you really needed to do that and contribute in that way? Maybe you can share a little bit of uh how that advocacy is actually making difference.
SPEAKER_04I think we don't fit the mold for people's leprosy in many ways. Um people have preconceived ideas about it. And also the necessity for an early diagnosis. I have such a heart for people's leprosy. I can remember somebody just showing me a short clip and a person's foot was being cleaned down there, and I just began to weep because I know what they've been through. So it's my deepest desire, it's our desire to be able to do something to help other people who don't have the platform that we have.
SPEAKER_01Right.
SPEAKER_04The other big thrust that we have is the late diagnosis and the early diagnosis of leprosy and the deep necessity to have an early diagnosis. We try and encourage people just to come forward and say there's something wrong. But I just say at the age of 12, 13, I knew there was something wrong, but I didn't speak to anybody and thought it happened to everybody. So I just use that as if you think something's wrong, find someone you can speak to. And so we have a voice and we can go to places. It's an incredible privilege to be able to represent leprosy sufferers around the world. In my years of advocacy work, which is the 23rd year right now, I've come across many, many bits of legislation being presented to me, rulings, and expectations that are proposed and accepted by non-leprosy sufferers. What am I trying to say here? I have often felt that there are people making decisions for me who have got great ideas but do not know me personally. I can remember saying to uh a Dutch doctor one day, we were there, and I said, I've often said to medical staff, thank you for your drugs, but give me your heart. What is the case for us that have experienced entities and the voice? I feel the most obvious one is needs versus perceived needs, observations and recommendations. At times I felt a non-verbal comment coming to me. We know what you need, and we know what's best for you. It's not said, but sometimes it's just there. And you kind of feel there's a whole lot going on about you in consultations which are held behind closed doors. Now, I don't know if it's my character, my my mind, I have an inquiring mind because of of what I am and who I am, is that I wanted to know why. For example, when I had my leg amputated prior to it, three years of intensive medical interventions, um, antibiotics. I was just uh we felt the best thing for you to have an amputation. We've got to the end. Well, that was it. I was just too glad that I might get better, that I said, yes, let's go ahead with it. But I know today I would ask many more questions as I've gone through the years. In this, we know what you need, we know what we've got for you. It's difficult because in all these situations, and I know it's wheels within wheels, there are multiple moving parts to prescribing something, to providing something. There are all these moving parts in everything, and sometimes some people can't handle the moving parts. Understanding localized practices are enhanced by having a local voice input. I fully understand this is not always possible, but there needs to be a strong blending of research, academia, and local understanding. That's extremely important. Yet there are caveats to having said all this. Research and academia are key, but often these two things are done in isolation from people suffering from NTDs. Or because it's a long term, there's been lots of papers written about, and somebody's looking for something new to write about it. My idea. Fine tuning to findings need to be confirmed by on the ground consultation. So hearing from people with lived experiences is vital to understand what is needed and then what is experienced in the diagnosis and outcome of everything. Life is larger than any disease.
SPEAKER_01Thank you, Dan, for joining me today, sharing your story, and I wish you best in all of your future plans and endeavors.
SPEAKER_04Thank you, Gary. So kind of you appreciate that.
SPEAKER_01Next, I've invited Peter Wada, CEO of the Leprosy Mission Great Britain, to join me in reflecting on Dance Insights. Drawing on nearly two decades of experience working alongside people affected by leprosy, Peter offers a unique perspective on the challenges and opportunities in this field. Hi Peter. Hi Gary. I understand you uh listened to our conversation. What are your thoughts or reflections on that?
SPEAKER_00I know Dan well. And my first thoughts are what a remarkable man Dan is, having been able to rise above all that he has experienced in his life. Because I've met many people in in Dan's position, you know, suffering from lepsy, suffering from N C Ds, that are that are literally beaten, um, you know, scared to interact. It's great that Dan is prepared to share his story, that he's prepared to be so brave about something that, you know, in the past has brought uh discrimination into his life. So it's always humbling to hear him speak.
SPEAKER_01Yeah, it's so important to have people with lived experience sharing those stories. I'm sure in your advocacy work as well, this also is an extremely good example. Uh do you feel that uh there are certain aspects that we in global health need to do more when it comes to sharing stories from people who actually are living with this terrible condition?
SPEAKER_00I I really do, and uh the I have to say that we have to look at ourselves. We we the charity that I represent is the Lepsey Mission. Yeah. Um we've got this wrong in the past. I'm I'm pleased to say that we have just developed a new five year strategy which is being launched next year, and we've got a four specific task force that I have been invited to be part of the task force with, and I'll read this, that is intending to partner with, support and connect organisations of persons affected by lepsy to achieve greater inclusion and the reduction of discrimination. Anyone that has not experienced lepsi cannot understand the depth of the stigma uh uh that is involved. And the only way we can get that across to each other, even to national governments, is for the very people that have experienced it, that have suffered those horrors in their life to be prepared to speak up. Let's make the most of every opportunity we have to hear, not from the so-called experts, and I could be included as one of those, you know, working for the leprosy mission uh in the UK, but in fact the people that are the real experts, the people that have suffered, the people that have cried because of loneliness, the people whose lives have been devastated just by a simple sentence from a doctor to say you have leprosy.
SPEAKER_01I wanted to also tell you that when we started doing the episode we thought we were gonna focus on a neglected tropical disease, but then clearly it evolved into the disabilities that people live with while having an NTD.
SPEAKER_00You've touched on a really important point there. Uh discrimination and disability go hand in hand because for many people with neglected tropical diseases, it's not the disease initially that's the problem. Most of them, you know, if diagnosed early, they can get the pills or whatever it takes to clear up that disease. But the discrimination stops them coming forward and acknowledging it. In fact they all hide those early signs. And the sad thing about that is that's when the disabilities start to occur. They don't occur on day one, they can be years down the line. But because of that discrimination they won't come forward. So it's so important that people like Dan are prepared to to speak up. Dan has travelled the world um and and spoken to people about his experience. I wonder how many people as a result of just Dan's ministry have sought treatment and maybe don't even realise the difference in their lives now living without a disability rather than living with a disability.
SPEAKER_01Mm-hmm. That was quite inspirational, I agree. Any other reflections you had, Peter?
SPEAKER_00Um, Dan is a really special man, but when you dig down into some of the words that he shared and and I wrote some of them down at the time, fear of rejection was erased after I shared my testimony. That's a quote from Dan. Mm-hmm. And then he said you have to ignore what people really think. Well, that's not saying that there's no discrimination, if you're saying you have to ignore what people really think. He also remembers even himself singing songs about lepers, you know, we don't use that word. But Dan remembers before he was diagnosed that it was an insult to refer to someone in that way. And he said he kept it a secret for twenty-eight years because of the fear of being rejected. Now that is not the words of of a man that hasn't suffered discrimination. That is actually the w words of a very brave man that has overcome it, but it's taken him decades to achieve that. Well done for for managing to achieve that where where others have been beaten by the fellow man uh and the insults that come their way. But even when people are brave and say, I don't feel discriminated against now they may be hiding years of hurt and we mustn't forget that it's taken decades to get to that point feeling that they have an identity.
SPEAKER_01Peter, many of our listeners are people who work in global health. So any thoughts on action that they can take to reduce stigma and increase inclusion of people both living with disabilities or an um NTDs.
SPEAKER_00Very much so, because one of the problems that we find is and Dan did touch on this, misdiagnosis. Very often they will g seek help from many, many different quarters, and often it's from the trained health professionals who don't recognise the early signs of these diseases. So I think it's really important that N T Ds when you bring all of those diseases together, it affects certainly more than a million, many more than a million people. And millions of people that are seeking a diagnosis in the next year will go and seek a health professional and are misdiagnosed, then we've got a big problem because if you can solve the problem at that point in even in terms of cost, if you bring it down to cost just a a course of, you know, multi-drug therapy for lepsy and similar treatment for other N T Ds. But if you allow it to develop into a lifetime of disability, then it's going to cost health services globally an absolute fortune. So it's really important that N T Ds are an important part of health training and the early stage of of careers, particularly for doctors and for those working in areas where N T Ds are thriving.
SPEAKER_01This was great. Uh thanks for your reflections, Peter, and thank you for uh all the work that you're doing.
SPEAKER_00Thank you, Gary, for the opportunity.
SPEAKER_01I hope that you, our listeners, found the conversations of this two-part episode as insightful and inspirational as I did. If you haven't yet had a chance to listen to part one featuring Mollikat Okonlavo and Claire Gintet, I highly encourage you to do so. It's not to be missed. Both Dan and Mollikat discovered a newfound ability in their disability, and they are using this to ease the fear, pain, and stigma of others with similar neglected tropical diseases. As we commemorate World NTD Day, may their journeys remind us all of the immense value, wisdom, and insight that people with lived experience bring to the fight against NTDs. I'd like to leave you with a poem written by Dan.
SPEAKER_03Extend an open hand. The head of the voice is good. Not quite. No longer. No longer.
SPEAKER_01To learn more about the topic discussed in this episode, visit the episode's webpage where you will find additional readings, show notes, and translations. Don't forget to get in touch with us via social media, email, or by sharing a voice message. And be sure to subscribe or follow us wherever you get your podcasts. Global Health Matters is produced by TDR, a United Nations co sponsored research program based at the World Health Organization. Thank you for listening.
