Shownotes:

Not many people in the western world have heard of Hansen’s disease or Leprosy – for most who are familiar with it arouses fear and aversion. It is a tropical disease that occurs in more than 120 countries, has been referenced in the bible and Victoria Hislop wrote The Island inspired by a visit to Spinalonga, the abandoned Greek leprosy colony, which sold over a million copies.

My earliest interaction with the disease was on the Main Street of the city I grew up in. Along the street, one aften came across a small group of people begging for alms, those badly affected being pulled on makeshift carts by the more able bodied. The easiest thing to do was to ignore them or pretend one could not see them or their plight. That was my first experience of shame. Shame at the lack of knowledge, confidence or ability to engage with respect with people disfigured and ostracised by disease. However, this is not about me but about people who are disenfranchised, excluded from accessing healthcare, education, economic opportunities and social support because of fear and misinformation.

A couples of months back, I happened to be seated on the same take table at India Week as Sian Arulanantham, head of programmes and research of Leprosy Mission UK. We got chatting about the incredible work they are doing across the world and in India and I invited them to be a guest on my podcast to speak about the important work being done to eradicate an ancient disease that stigmatises and makes outcasts of over two hundred thousand people every year.

In this episode of The Elephant in the Room podcast, Daisy Mansfield Policy and Advocacy Adviser at Leprosy Mission talks about the work being done in India and across the world. We spoke about a) how they deliver on their goals in this highly complex geography b) behaviour change campaigns for education and removing social stigma c) Strategies to empower individuals and families d) Roles models with lived experience of disability and stigma e) WHO 2035 goal for eradication of the disease and challenges to getting to the target

The most important thing to remember is that if detected early, the disease is curable with multi drug therapy (MDT) and the good news is that the WHO has made MDT available free to all leprosy patients around the world (with the help of big pharma).

Head to the podcast to listen and see how you can support the cause 👇🏾👇🏾👇🏾

Episode Transcript:

Sudha: Good morning, Daisy. Lovely to have you here today. I'm so glad that I met with Sian and Louise at India Week recently in London. And that's how I came to know about the work of Leprosy Mission UK. So, let's start with a quick introduction. Tell us a bit about yourself.

Daisy: Hello. Yes. It's so nice to be with you on the podcast today. Thank you very much for having me. I'm Daisy and I work for the Leprosy Mission and have done for about three years now in a number of different roles. So, my current role is called a Programs and Advocacy Officer. Which means I am a point person, look after some of the projects that we fund in India and work in partnership with our team over in India. And previously I had roles in fundraising and also advocacy and policy working with UK stakeholders in parliament and also in international spaces such as the UN and WHO to advocate for people affected by leprosy.

Sudha: That's very interesting. So, we are here today to talk about leprosy or Hansen's disease. How prevalent is it globally? What is it and what are the symptoms? There seems to be a lot of ignorance, especially I'd say in Western countries. And it doesn't exist in lot of Western countries. So tell us a bit about it.

Daisy: Yeah, certainly. Actually, when I first joined the Leprosy Mission, I thought, Oh, I know what leprosy is. And I quickly realised that there was a lot of misunderstandings or misconceptions about the disease that I had thought were true.

And leprosy is one of the oldest diseases known. We see it back in biblical times, but there's so much of the disease that is so misunderstood in today's world and as you said, part of that is because it no longer exists here in the UK. It did many years ago and affected many thousands of people.

But today we see it across the world, particularly in places where poverty exists and slightly poorer communities, rural communities. So, you might be surprised to know there's 200, 000 new cases every year. And so. if you do the rough maths on that's about one person every two minutes.

And that's new cases of leprosy, but also there's thousands of people or millions of people that are living with the causes of leprosy which could be disability. It could also be the stigma that is surrounded by a leprosy diagnosis, which I'll talk a little bit more in detail about later. So, leprosy is a bacterial disease that is spread through prolonged and close contact and many of us think that leprosy is actually caught by touch, but that is a myth. It is not caught by touch it's transmitted through water droplets in the air, so between coughing and sneezing. But you need to have that prolonged contact with someone to catch leprosy.

Some people may remember many years ago. Princess Diana was heavily involved in work with people affected by leprosy. And she was over in India and there was a very iconic picture that hit the news of her with her hand, her arm around somebody affected by leprosy and everybody had told her, You can't touch them, don't touch them, you're going to get leprosy, and actually she'd been told by medical experts in these hospitals that it was okay, it wasn't caught by touch. And so, there's another example of a miscommunication that many of us have.

And let me just talk a little bit about the symptoms of leprosy as you've asked. So, leprosy affects the nerves and particularly in people's hands and their feet and they lose feeling in their hands and their feet. And you can perhaps imagine that you're cooking, and you've got a saucepan on the hob or something, and yes, it might be hot, but until you touch it, do you know how hot it is and actually. If you put yourself in a slightly more rural position where you perhaps you're cooking on an open fire, and you have a pan there if you have no feeling in your hand, there is nothing to tell you to remove your hand from this hot pan and you can so easily burn your hand and you can get really severe wounds and ulcers. And particularly many people experience ulcers on their feet. And these can get infected and if they're not looked after properly, sometimes there's no other choice other than amputation for people's legs particularly.

And so, we see one story is a young girl called Shakti who was in one of our hospitals in Nepal. She was only 16 years old and because her leprosy hadn't been diagnosed for many years. She'd hidden it away but also medical centres which she'd been to had not necessarily diagnosed it, she hadn't received the treatment particularly early and actually at 16 years old, she had to have an amputation of her leg. And the impact that had of her not being able to go to school and she had dreams that she wanted to become a doctor and the implications then of how her life changes at such a young age. One really key thing is to be able to find and treat people with leprosy as early as possible. The sooner people receive medical help, then the less likely they are to have implications.

Sudha: Daisy, is there a cure for leprosy? I know in India; all children are given the BCG vaccine just a couple of weeks after they're born. But I'm aware that again, in Western countries, it is not so prevalent and it's not something that is given. And also, there is the anti vax movement, which is pretty strong.

Daisy: Yeah, so actually the good news is there's a cure for leprosy and it's relatively straightforward. It's antibiotics as we know. These antibiotics are called multi drug therapy, MDT. And they're taken for between 6 and 12 months, depending on the load of bacteria in somebody's body.

And for patients affected by leprosy, these antibiotics are free. But actually, they only cost 24 pound so, they're not expensive to provide for people affected by leprosy. And the link that you mentioned to the BCG vaccine obviously children get this vaccination when they're first born.

And this actually, offers a small bit of protection against leprosy. The primary job of that vaccine is tuberculosis, but the reason that there's a link is because the bacteria of leprosy and the bacteria of TB are almost like cousins. They share some similarities and so that vaccination doesn't necessarily fully prevent people from getting leprosy, but it does provide an extra level of protection.

And so, there's lots of research across many of the countries around the world research centres are studying how leprosy is transmitted, the actual bacteria and particularly a lot of research into the tools to di...

123: Are stigma and social ostricization the biggest barriers to eradicating Hansen's disease: In conversation with Daisy Mansfield, Leprosy Mission

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