Leprosy with Chris Stratta, The Leprosy Mission

Speaker Key:
 

CB              Chantal Boyle

CS              Chris Stratta

00:00:20

CB       

Before we start the interview, I wanted to issue a content warning. Please visit your healthcare provider if you are concerned about any issues relating to this topic. 

Welcome to the Sunflower Conversations. I am your host, Chantal. Chris Stratta from the Leprosy Mission joins us to explain what leprosy is and, importantly, help us to remove the stigma associated with the disease. 

So, one of the sentences which I picked up from the website is, everything we do is focussed on our mission to break the chains of leprosy and empower people to attain healing, dignity and life in all its fullness. And I think that that is a really powerful statement. So, welcome, Chris. Thanks for your time today, and looking forward to learning more about leprosy and, yes, picking your brains. 

CS       

Thanks, Chantal. 

CB       

So, the first question is, obviously, what is leprosy?

CS       

So, leprosy is an ancient disease that starts from a bacterial infection and people might hear the word leprosy and think, really, surely there’s none of that anymore in the world. Some people think of it as something perhaps even biblical, that they might have read about as a child but, actually, leprosy is a disease of poverty today and every two minutes someone is told, you have leprosy.

00:01:56

And so it begins with patches on the skin where people start to lose the ability to feel. But unless it's treated early, leprosy eventually stops you being able to feel anything in your hands and feet. So, if you think of the things that you’ve done today where you’ve needed to use your hands and feet, well, it’s almost everything, isn’t it? And so life can be dangerous if you can't feel what you're doing. 

You could easily burn yourself by touching something that's too hot and not feeling it. You could cut yourself with a sharp knife or a tool that you're using for work. And that's why, for people affected by leprosy, it's so important for them to get the cure for leprosy early, before they get any damage to their hands or feet.

CB       

And how long would it be for somebody...? You said if it's treated early, so how long can this bacteria be in somebody’s body before they start to feel the symptoms? Because there’s no screening for it, is there? 

00:03:03

CS       

So, there are ways that you can test whether someone has leprosy. If you’re in a hospital, you can see leprosy under a microscope after you've done a blood test, which is great. But, of course, if you're in the middle of nowhere, in a rural village, you might not have the means to do a blood test and there, yes, at the moment you would rely on being able to see if someone has got the patches as a sign of their leprosy. 

But, of course, by that point, by the time they’ve got the patches, they’ve already started having symptoms and so ideally you’d want to find someone even before that. But we’d love one day to have a diagnostic test where you could very quickly see, yes, this person has leprosy and let's get the cure to them straightaway. 

That is why part of what we do, if we're able to find someone affected by leprosy, we're trying to go and meet their family and friends in their village and see whether they have leprosy too, because that means that we could treat a whole family with the cure, which is like antibiotics that you take for six months to a year. Yes, it can survive in the body for up to 30 years, leprosy, in rare cases. So, it’s very slow. It can be slow to develop.

CB

30 years before it manifests itself?

CS       

Yes. Not for everyone but in rare cases. It can just be a matter of months. And that means, for example, that children do get leprosy. About 10% of people getting leprosy each year are children, very sadly.

00:04:35

CB

Yes. And can you explain some of the history about leprosy and why it exists in some parts of the world and it's no longer in the UK?

CS       

So, leprosy has always been the disease of poverty. And so, since the conditions of poverty largely were much improved in Britain about 200 years ago, there hasn't been leprosy as a native disease here. So, for example, if you think of in Victorian days, it would have been safer to drink gin than to drink the water. And some people might think, oh, that sounds rather nice, being able to drink gin. 

But if we can imagine, actually, what it's like not to have drinking water, disease would spread easily in those times. People didn't always understand nutrition well, or they weren't able to afford to have a balanced diet. And also, of course, we didn't have a good sewage system. We didn't have proper toilets in the past in Britain and leprosy thrives in an environment where there is not clean drinking water, nutritious food or proper toilets. 

And so it's parts of the world today where people don't have those privileges, really, where leprosy survives and thrives. And so that's why part of our work, as well as finding and curing people with leprosy, is also trying to improve their living conditions, things like building wells and building toilets so that it's much harder for diseases to spread.

00:06:09

CB       

Yes, because it really still is a disease of poverty, isn't it? It must be so hard to actually work or do anything when you're affected so severely with your nerves. So, we’ll come on to now what are the symptoms of the disease? 

CS       

So, the main thing leprosy does is it stops you feeling pain. And so if you can imagine the dangers of life without pain, you can get infections in your hands and feet, and it can get to the point where your hands are so damaged that you can’t use them easily to work. And eventually the bone, cartilage, tissue, it will dissolve and erode away, and so it can look like people have got very damaged hands. 

Or even, it can look as though people's fingers have fallen off, even though that's not what's happened. And so, yes, very sadly, people with leprosy can end up needing to beg to survive, when they’re not able to work. Sometimes we're able to do reconstructive surgery to people's hands and that enables them to go back to work again. 

That happened for a guy I met in India, and when I met him in a hospital in Calcutta, the thing that really struck me initially was, even though he had a mask on in the hospital, I could tell from his eyes that he was smiling broadly. And I thought, wow, why? This young man with leprosy, why is he so happy? 

Because his life must have been so different from mine, having to live with leprosy. I could see, looking at his hand, that one hand, his right hand, was very clawed and I went over and had a chat to him. I don't speak Bengali and he didn't speak English but we had a... Someone supported a bit with translation an, and it turned out he works as a tiler and he’d got leprosy. 

00:08:01

The nerves had affected the muscles and so the ability to use his hand had become really difficult. And he said, I'm just so happy because I came to the hospital. I've been able to have surgery on my left hand. And I could see already that his hand had been clawed. He could stretch out completely, which was amazing.

CB       

That’s phenomenal, isn’t it?

CS       

Yes. And he said to me, well, I'm coming back in a few weeks to have my right hand seen as well and this means that I can keep living life to the full. I can look after my wife and daughter. So, we were, yes, really thrilled to hear the positive impacts that can be had. For people who aren't found with leprosy as early as he is, or don't have the means to get to a hospital, then it can be much tougher, and we do meet people, very sadly, who have got long-lasting disabilities that mean that, really, they can't get around. 

One lady, who lives in the south of India, she had such bad disabilities to her legs and didn't have any mobility aids or a wheelchair, that eventually it got to the point for her that in the rainy season, when the monsoons hit in Chennai, she was just left sitting in her little house, which was like a goat shed. 

00:09:19

It was tiny. Just in the dirty flood waters, with her ulcers from leprosy getting infected by the dirty water. And it was there that actually someone from the Leprosy Mission found her and was able to take her to a hospital and get her support. Her home, that had been badly flooded, was rebuilt and made more flood resistant and made accessible for her needs with a ramp. And she was given surgery to her hands. 

They were very damaged but they were able to to do surgery in such a way that she has a hand that looks a little bit like a claw shape but she can use... She can do up Velcro with that on her shoes, and she can use cutlery, like a spoon, to feed herself. So, she says, look, now I feel fully independent compared to what her life was like. I see videos of Magamel with the damage she's got to her hands and feet. 

How can you say you're fully independent? But that's how she feels compared to how her life was. And so, even if someone has really bad damage, there's still hope. There are still things that we can do because of the kindness of supporters who make it possible. But, of course, we love it when we can find people early and give them the cure before they have any physical disabilities.

00:10:34

CB       

Yes, and that's the key thing there. You've mentioned cure a few times. So, it is a curable disease, which is so hopeful, to know that for the communities in the countries that you're working in. So, it’s not in the UK. So, it's my assumption that in Europe we wouldn't see it, for example.

CS       

No. Not normally as a native disease, no, in Europe. It really is limited to the poorest parts of the world. The three countries in the world with the most leprosy are India, which has about half the global cases every year. I think partly because of the vastness, the scale and the size of India as a country. And, of course, there is a huge gap, a huge wealth divide in India, but the poorest of the poor, life is so tough for them. 

Country number two is Brazil in terms of leprosy cases, and number three is Indonesia. So, it really is spread. We think that the vast majority of global leprosy is restricted to about 27 countries where there’s the most leprosy because of poverty. There really is a... Yes, there’s a clear link between poverty and leprosy, and we work in five countries in Asia and four in Africa, based on countries where we're able to work safely and where there's a relationship with the government and we're able to do that, which is encouraging. 

But also places where leprosy is rife and we feel like we can make a big difference and a big impact. Some countries do have their own leprosy programmes, but others might not or they rely on support from people like the Leprosy Mission to make a difference.

00:12:27

CB       

Yes. So, how infectious is it? Because I... I don’t remember, because I wasn’t alive then but you would hear basically certain phrases and also that I think there are colonies where people are taken to. So, this is the idea of separating people who are living with leprosy, and who are affected by it, separating them away from people who don't have it. So, in reality, how infectious is it?

CS       

So, leprosy is infectious but it's not highly contagious. And the reason we differentiate between those terms is contagious gives the impression that if you're in contact with anyone who's got it, you will certainly get it. We say infectious for leprosy because normally you would need to have been in quite close proximity to someone with leprosy for a while. 

So, for example, perhaps a housemate or a family member, a work colleague. Or it could be someone you've been working alongside, even if your work is outdoors. But you would have been in proximity to them probably for a while and you would have caught leprosy from them, for example, coughing or sneezing or talking very near you. 

It does vary but that's why we say infectious, not contagious. And, yes, people are still today expected to live in leprosy colonies, communities of people who have leprosy, and that is really sad, that that is the case. And it doesn’t need to be. People might have memories of reading The Island by Victoria Hislop and in Europe, even I think into the 50s in that book, memories of people with leprosy put onto the island of Spinalonga. 

00:14:17

Yes, so that is something that happened as recently as that. In Britain we had leprosy hospitals that were still being used for people affected by leprosy who’d come from other countries with leprosy. Nowadays, most of them are not being used for that purpose anymore. Some of those hospitals were demolished and are now probably housing estates and other things. 

But, actually, it is so sad that around the world people do still live in colonies and part of the work we do is to try to educate people, to say, look, this is a medical problem. This is not something you need to be terrified of. This is not something that someone has somehow brought on themselves because of the life they've lived which, sadly, can be the way people are treated. This is not some kind of curse. 

CB       

Right, yes, so there’s superstitions around it. 

CS       

Absolutely.

CB

That really does bring the fear, doesn't it?

CS       

Yes, that's true. And so, part of the work to try and educate is so vital.

00:15:13

CB       

You are listening to the Sunflower Conversations. Remember to hit Subscribe.

CS       

Our work in Sri Lanka is to some community health workers into schools, and to help educate there because, of course, if children can understand leprosy, in doing that you also educate parents and other family members, and you educate teachers who are professional people that can pass on the truth about leprosy.

We met a young man who had leprosy himself, and when the head teacher realised he had leprosy, he said, I don't want a boy with leprosy in my school, he needs to leave. And so Kavenas wasn't allowed to go to school for a while and the Leprosy Mission heard about this and a community worker went in and they said, look, this is not a curse, Kavenas has had the cure. He can’t pass leprosy on to anyone here. He’s not dangerous, you should let him return.

So, Kavenas started coming back to school. But the head teacher said, hang on, why is Kavenas back? I haven’t said that he can do this. I’m not happy with a child with leprosy here. Either he goes or I go. Even after they’d this person from the Leprosy Mission visit. And so thankfully the teachers and the parents supported Kavenas and said, no, we understand leprosy now. 

And so the head teacher left, which in some ways is sad, but it is a victory for Kavenas and for other children just like him. And so that just shows that even among educated people there can be stigma. But for every person that realises the truth about leprosy, that is a victory, and we are really grateful that the kindness of supporters makes it possible to educate people in schools to understand more about leprosy. It's not a curse. It's a disease of poverty that's curable.

00:17:02

CB       

And so we've touched on the barriers that people are living with. So, there’s the physical barrier. There’s the emotional barrier and public perception as well. That’s what one of my questions was, is that once somebody has had treatment for it, how is the general reaction about them reintegrating back into their community?

CS       

It varies. So, for example, Assim, who I met, I asked him, had he faced any stigma when he had the cure for leprosy? He said, no, actually, it was okay. I took the cure. People knew I had leprosy and it was okay. They understood. Other times people do face a horrible stigma. One lad, very sadly, in India, even after she'd had the cure, when her family realised she was taking medication for leprosy, they set her on fire. Absolutely atrocious. 

Other people, a lady we spoke to at the hospital in India as well, she very tragically had had a wall built around her house that was above head height. So, it was a way of trying to block her off from the outside world. So, people can face horrible hardships because of leprosy. Having their electricity switched off, all kinds of things. And so, yes, education is really vital. And it is variable. 

00:18:37

Some people won't face much stigma and others will. One lady I met in India, a challenge that she faced which actually, sadly, is not uncommon for people with leprosy, is when her husband realised she had leprosy, he left. He moved to Delhi in the north of India and met another woman there and didn't send any support back for his wife and his two teenage children, just because of this disease that she’d had the cure of. Really sad. 

There used to be quite a few laws that discriminated against people affected by leprosy. One of those was that legally you can divorce someone just because they've got leprosy. We worked hard to advocate and that law has now been repealed, thankfully, in India.

CB       

Is that the same in Brazil? And, sorry, what was the third country?

CS       

Yes, Indonesia.

CB       

Indonesia.

CS       

I’m afraid I don’t know much about the legislation in those countries because they’re not ones that directly I’m involved with. But, yes, I do know that stigma is still such a massive challenge. And I think if we can work towards advocating to help people with leprosy know what their rights are and others know that it's a medical problem, you mustn't treat someone differently because of this disease, then that's massively important.

00:19:55

CB       

Yes. And so that’s what we need to do as a society, to support with funding and really helping to spread the messages that you guys are working really hard on. You've got some wonderful videos on your website that people can watch and share, and share by any means possible, so that we can all learn a bit more about this and help to eradicate not only the disease, but also the stigma and the perception of it. The Leprosy Mission, that’s obviously what you're doing, that's the main aim.

CS       

Yes. So, our aim is we talk about the three zeros, which you've touched on in what you’ve just said, Chantal. So, it’s zero transmission. In other words, stopping people from passing leprosy on. So, a big part of that, of course, is giving people the cure and making it harder for them to pass leprosy on, but also working towards preventative treatments for leprosy too. 

We talk about zero disability. Of course, the sooner you can find someone and cure them, the less likely they are to develop long-term disabilities. And thirdly is zero discrimination. And, of course, that is fed into by the other two zeros too, because if someone’s had the cure and they haven't got any disabilities, they're more likely not to face discrimination. 

But even when someone has already got disabilities, of course it's so important that we protect them and we make sure they don't face stigma as a result of their leprosy. And that's when the education and the advocacy come in.

00:21:41

So, it is very much about those three things, transmission, disability, discrimination. And every time that someone shares the truth about leprosy, or has a conversation with a friend about about leprosy after listening to this, then that helps. It helps spread the word and raise awareness. 

If listeners would like to help spread the word, then one way they can do that is by inviting a speaker from the Leprosy Mission to come and and give a talk at a community group. Because for each person that understands leprosy better and can raise awareness and can say, yes, I want to be part of this, part of this mission to end leprosy in our lifetime, that's really exciting.

CB       

Yes, absolutely. You could give the the website address so that people can get in touch with you and we can have the links to the social media, etc., in the show notes.

00:22:33

CS       

Absolutely, yes. So, leprosymission@org.uk is our web address. Please do go there and you can find out more at download resources. You might even want to run a big quiz, which would be a great thing to do too. You can find resources for that online.

CB       

So, to round off, I think that it's really important for us to know that the cost of somebody having a cure is the equivalent to going out and having a meal for one person, probably. So, it is affordable. Chris definitely has said to me in the past that he can see a future where leprosy has been eradicated.

So, please get involved, have a look at the website and see what you can do, and share the all the positive messaging about how we can support people with leprosy. If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. 

If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.

00:23:59