How Resilience is Helping Women Win the Battle with Leprosy

Lepra and the University of Essex are co-hosting a special event to celebrate International Women’s Day

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Good evening everyone hello and welcome I’m Professor Victoria Joy dean of Integrated Health and Care Partnerships here at the University it gives me great pleasure to welcome the mayor and mayoress of culta councelor John JZ and Mrs Susan jwz all colleagues from lepra our University of Essex students and colleagues and our University

Guests I am so thrilled to welcome you all to the University of Essex and to this very special event this evening welcome too to those of you who are joining us online via YouTube this event tonight is very special in that it is truly Global with the majority in

Fact of our attendees this evening joining us online from across the world I am told as far away as Australia India and Africa hello to you all this week we celebrate International women’s day and this year’s theme is Inspire inclusion when we Inspire others to understand and value women’s

Inclusion we without a dark Forge a better world for us all and this evening we hope that by sharing stories from women affected by leprosy and from those involved in research and treatment that you will be inspired to understand more about this very neglected disease we are delighted to be hosting

Tonight’s event which is parts of lepr Centenary year and the University of essex’s 60 th anniversary celebrations our partnership with lepra enables us to collaborate on projects and academic research where we share common interests and to advance the fields of public and Global Health through this partnership lepra

And the University of Essex plan to explore and create Innovative joint projects which will have a longlasting impact for people affected by leprosy some examples of our collaboration include colleagues in our school of health and social care who have been working with lepra since our online launch meeting with the World Health

Organization setting up an exterion project on one health approach and the nected tropical diseases for our MSC Global public health program and the subsequent discussions that then led to a project focused on Mental Health Human Rights and neglected tropical diseases for which Judith Bono deis and Professor anou Capa shami secured a PhD

Studentship which was awarded to C COI who will actually join us I’m happy to say as part of the panel later this evening within our Institute of Public Health and well-being our deputy director Professor Robert stori participated and presented to the World Health Organization neglected tropical diseases modeling Consortium meeting in Geneva in

202 2 and with lepra through middle sex University we were able to fund two em students to work on Wastewater monitoring so there’s lots to Showcase and lots to be proud of and tonight we are showcasing how resilience is helping women win the battle with Leprosy we are delighted to welcome come

Some truly inspirational women who will give short presentations highlighting the very valuable work they are involved with in the fight against leprosy and I know Suzanne will say a little more about the program shortly so I’m not going to talk anymore but it gives me great pleasure

To now invite Suzanne McCarthy the chair of Trustees at lepra to say a little bit more about lepra and our event this evening [Applause] Suzanne like Victoria I think I have a very strong voice so I don’t know if I need to put this around my neck um but

If you can’t hear me raise your hand in the uh cheap seats the back row and I will do my best to speak even louder from the diaphragm um Victoria thank you very much I’m a afraid some of the things you said I’m going to repeat but

If they’re so good they’re like New York New York worth a second a second statement and it is a real honor for me to be up here at this event and to welcome you uh on behalf of Lea UK and the live streaming uh that is going on

Welcome everyone globally um as you’ve heard this is one of the events to Mark International women’s day and we’re playing placing the spotlight specifically on women who are affected by neglected tropical diseases and we’re very grateful at lepra can I tell you to the University of Essex for hosting this

Important event and to the university events team who I’ve met some of them today uh for their assistance and expertise in working with us to get this so well organized and like you Victoria I’d like to thank the mayor and mayores of coester um lepra is one of the mayor’s

Charities this year and we are incredibly grateful for that partnership Lep’s partnership with this University started in February 2021 when we signed a memorandum of understanding and we are delighted to work with them on this joint event the first one of its kind and hopefully

There will be many many more now I know how to find the stem building that is when I joined the leper board in 2020 I knew very little about leprosy and the complex and profound individual and societal uh issues surrounding them what I learned was that these

Diseases are not that of the past they are not biblical they happen now and they happen to people they happen to women like women in this room today over three million people live with Leprosy causing them to suffer damage to their health their livelihoods and their families those suffering often poor they are

Marginalized and women in particular are adversely affected leper UK Works in India and it works in Bangladesh to raise awareness to prevent treat um disease and to treat and followup patients as well as strengthening Health Systems and assisting governments in their leprosy management programs on the positive side and this

Is something you always have to carry with with you when you’re involved with lepra is that leprosy is totally curable and if caught early the free and simple treatments they change lives the as you’ve heard this is lepa’s 100 year we haven’t had a telegram from

The King but it is our 100th year and we are celebrating in great style our centinary and this is one of the events that we have been holding this year to celebrate 100 years I have to tell you we do not want to be around 100 years

From now we want not to be needed but we are needed today and right now and throughout its history lepra has been in the Forefront of innovation whether it’s new cures and treatments or ensuring the people affected by leprosy are fully involved in all aspects of our

Work now we do have an exciting program for you this evening we’re going to start after me with uh the ameritus professor Diane Lockwood Diane is an internationally renowned academic I’ll probably call her to blush now but I’m going to say something about her because during her long and distinguished career

She led Global Ley research team at the London School of hygiene and tropical medicine she’s going to speak about the new phases for leprosy project that she and Tom Bradley a photographer have been very much involved and led and some of the photos from the project are on display in the center this

Evening you’re then going to hear from Maria and M Maita who are lepis program managers for India and Bangladesh respectively and they’re going to speak about the critical role of women in the control of neglected tropical diseases and we’re also then going to hear from manik Yama in India and mauda in

Bangladesh not just about their own lived experience of leprosy but also who they are as women who are leaders and we’ll finish with a Q&A panel discussion and taking part in this will be Cameron Coy a researcher from Bangladesh who was a awarded a human rights um Center scholarship and is working in

Partnership with lepra uh sampa Basin uh a member of LEP board Judith bueno dequita from the Essex law school and co- deputy director of the human rights Center at the University and last but not least and the only man but we’ll make you an honary woman tonight is Jimmy Inn lepis

CEO so think about your questions online or in the audience we’ll take as many as we can and I hope you all have an engaging evening and now Diana the microphone is [Applause] yours thank you well it’s a great pleasure to be here this this evening um and I’m

Delighted to be part of this uh uh International women’s day event um and what I want to do is I want to talk about my journey in leprosy um how I became interested in leprosy uh the people uh who mentored uh and supported me and uh why I think that lepr is still

An in interesting disease to work on and how we still need to be working on the the the uh the different challenges people often ask you know how did I become interested in leprosy well I had a gamp here as a student uh I grew up in

Werer and I had a place in medical school but I uh dropped out and I went to India like all kids in the 1970s and when I was there I volunteered in a leprosy hospital um and I could it was a big old-fashioned leprosy hospital um there were hundreds of patients there

But they were just uh developing new antibiotics uh which may was going to make leprosy a more treatable disease and they were also educating uh the patients to look after their hands and feet so that they got less damage to their to their hands and feet and I

Could see that the leprosy was a very interesting disease uh I also traveled home over land um so I traveled um uh uh from from India uh across Pakistan uh up the Kaiba pass and then to Afghanistan Afghanistan was then ruled by the king

And was a much nicer place to go um and then I’ve then I’m I went to uh Iran uh which which was ruled by the the Sha and then I I crossed the turkey and then I came home and I then started my medical St uh studies um uh in the uh Birmingham

Uh University but this had given me the the bug of being interested in leprosy um and it had also fostered my interest uh in uh in travel so what happened was I then I trained in medine and then you can say that I I super specialized in

Leprosy um and I did a PhD in that leprosy which then actually took me back to India uh um working on uh uh the uh Immunology of of leprosy and uh and nerve damage um and I then was appointed uh hospital for tropical diseases um uh

As a consultant there and and I uh also looked after leprosy patients in the UK and I ran an academic research program at the school of hygiene and and tropical medicine looking after leprosy patients in the UK is very interesting and I actually saw patients from 83 sorry from 33 different countries um

That’s because there are so many migrants to London and people then uh present with their with their leprosy there but what I was interested in doing I was interested in improving patient outcomes because uh this to me is is the most important part of of

Leprosy uh I also had a very good Mentor Joe coulston Joe coulston was also involved with lepra he was the a microbiologist at the National Institute for the for medical research um and he was chairman of the lebah maen and I was looking for a research project in

Leprosy and I went and talked to Joe uh and then he arranged for me to uh go to hydrabad uh and to do the my research there so that meant that I I again I’ve been going to to Hy hydrat since the the mid 1980s and I’ve seen a lot of changes

In uh in in hydrat um there uh there’s there’s one lipology in the UK um and and he then retired in 1994 and I was very lucky because I was then appointed uh uh to that uh to that post um uh and I was the the first woman who

Was appointed as a consultant at the at the hospital for tropical diseases and uh Joe was also very involved with the with the blue pther appeal um um which was the uh Christmas appeal raising money that um for for lepra um and that led to the to the establishment

Of of the blue blue blue Peter uh uh research at the center uh when I started at hospital tropical diseases I said um there uh I was the the only female consultant and by the time I left there were 50% consultants and and these uh the these

Are my colleagues there I was also uh succeeded um in my post as Le prologist by uh Steve Waters who’s the first blank consultant at at htd so so things do improve um so leprosy there are still many challenges with Leprosy uh we still um have a lot to learn about leprosy we

Still don’t don’t really know how it’s transmitted uh we don’t know why some people get leprosy uh why other people uh develop these immune uh mediated reactions the kind of leprosy that a person develops uh is determined on their own host immune response and so again there’s a spectrum of of of

Responses and again that M makes diagnosing the disease more difficult um and uh uh there’s no single diagnostic test for leprosy again that’s that’s that’s a challenge the for clinicians however we do have effective antibiotics uh and we’re very lucky because the we’ve got this combination of the aisin dapsone and clofazamine um

And that’s is a highly bacteriocidal combination uh and patients are treated with two or three antibiotics for either six or 12 months and we’ve got very high cure rates 98% which is amazing when you when you think um of other antibiotic regiments um and the drugs are provided free by wh uh to

The National leprosy programs however one of the challenges with Leprosy is that there’s a lot of inflammation in the skin and the nerves and this continues after people have been treated with their antibiotics and we know that about 50% of patients with multile Leprosy will will develop uh

Reactions and nerve damage and we’ll need treatment with steroids um and when we’re giving patients with steroids that improves the their their skin far more than uh than that than their nerves um and so what I’ve done is I’ve also done studies looking at trying to Define

Second nine agents of the of for steroids so we did a big study looking at ayin so we did uh a big randomized control trial uh in a hospital in uh in India um and we gave that over 300 patients at apron or or Placebo we measured the outcome using the combined

Score um and so we did an intention to treat analysis and we found that 30% needed the steroids we we did see there some improvements but unfortunately um ay treatment did not increase Improvement in in in patient outcomes and this is a very important negative study and it’s very important

To do and publish negative studies because um uh it’s only by uh uh uh doing negative studies that we can prevent unnecessary antibiotics from from being used um and I’ve also worked with many different people at the the leprosy group um um at the London school um uh this is uh Steve

Walker uh and uh here’s Sharon moo who works with me um and anim John worked on the on the studies in India and then saah is an Ethiopian who came and worked with me also and she’s now continuing doing leprosy work and she’s the again

At part of the of the London School uh uh project one of the important things in leprosy is to try and prevent neuropathy and you you do that by educating her patients to look after their hands and feet um and you know to get them to prevent them injuring themselves uh so

They need to do muscle exercises to strengthen themselves and Footwear for protecting anesthetic features very important um and lepr has been a leader in providing Footwear what’s important is to give people encouragement and hope um and so we’ve also set up the new face for leprosy project so one of the things

That happens when you go on the net is that you see a lot of negative images for people and so I’ve worked with a photographer Tom Bradley who’s here in the audience um and uh We’ve the photograph patients you know in India and in Bangladesh um and we’ve set up at

The this website uh and that uh also the the pictures that there are outside um I’ve also had very good Indian colleagues you know particularly at Blue Pizer Research Center and uh this was aana who was visiting the the London School uh fortunately she she she

Visited actually the same day as the man from the the who was running uh the global leacy research program so uh that’s uh that that that was nice and sujita is another Indian colleague again I’ve worked with him for a long time this is the the photograph the from about 10

Years ago from him again giving uh hope to patients and another important person was inder anath and inder anath was an Indian pathologist she again was involved with lepra uh and lepr supported her work and she worked on the Immunology of uh of leprosy looking at the drivers of of

Inflammation uh and she looked at the roles of the different T and B cells in uh um in leprosy and and she was associated with lepra and uh leacy view all her life and she was the the director of the blue Peter Research Center you know uh in the mid uh the mid

200s and and unfortunately she died last year and I’ve also been involved in um a Global Studies try looking at uh one of the other uh immune reaction so this is arthema noism the PRM uh and neuropathic pain and we’ve set up a global Consortium uh linking the let pred the

Research centers in uh eight countries um and again we’ve got a sity scale for the uh for measuring uh enl and and enl the severity um and we’ve also looked at the economic burden because one of the problems is that the enl reactions are experienced but mainly by young people

Um who are economically active and uh they take the financial hit when they uh are not able uh uh to do their their work I’ve also looked at neuropathic pain because again one of the things that you learn from patients is that a lot of them although they’re cured of

Their infections they have these neuropathic pains which are the uh stinging and burning pains and it’s really a an underrecognized problem but now is having the more the recognition and we also worked on HIV and leprosy because at the beginning of the HIV epid we thought that that HIV

Would would have unfortunate effect on leprosy and increase leprosy numbers unfortunately it didn’t uh and we’ve been we’ve been very lucky there um and this is the the the enlisted Consortium uh you know linking together you know uh academic centers you know in uh in Brazil Ethiopia um uh uh uh India the

And and the Philippines and this is a picture of from of one of the enlist meetings um and uh Joy DEA darong is there she’s also done a lot of work as an active researcher in uh in leprosy and is now involved in our latest studies and lepry review is another

Important publication uh that’s been supported by by Lea um and important contribution of of lepra and I was editor uh from 1997 to 2014 again it’s very important to to have the these these journals and Irene Allen um from lepra uh was was part of

That and I was also very lucky uh um to be involved with Victoria hisop because Victoria hisop uh needed some medical advice when she was planning her book about about leprosy so she wrote a book about leprosy called the the island um and this featured um a Greek leprosy Colony um

Uh that that changed and she so she came to me and asked about leprosy and uh and I I advised her and glant was great fun because you know it was uh interesting to see the book so when she wrote it and what happened was that the book didn’t do that well in

Hardback but when it came out in paperback it was then uh picked up by Richard and Judy as a sumon reed uh and then it just took off um and she then was awarded the newcomer of the Year award uh and this book has now been translated uh into 35 different

Languages um you know and has got again has got a huge reach and is helping to to reduce the stigma uh and Victor is also an ambassador for for lepra um and you know what I’d like to say is that I’ve had a hugely enjoyable Journey uh working with this challenging

Disease and you know that there’s still there are still many things to do many problems to solve um and that I hope that women will be encouraged to come work uh in in stem um and in this project um and you know I’ve worked with many people I’ve been part of many teams

And and that has just been so enjoyable at the uh doing that um and I what’s n nice is that I see my my protes is now in uh in many places so the last last week one of my Sri Lankan Pro gave a major lecture in in Sri LAN an about

Leprosy uh and so the yes so I’ve got I’ve got a network of women across the world um and I’m still keen on traveling and I’m still keen on cycling and uh I once cying in Mongolia for my holiday last year uh so so you can have a lot of

Fun uh on the way doing all these things Good evening everyone um Welcome to our presentation today I am Mita I’m working as a program manager for India at Libra good evening it’s a pleasure to be here in the runup for international women’s day my name is Maria and I’m the program manager for Bangladesh at Lea UK so the

Today’s topic that we are going to discuss is the critical role of women in the control of neglected tropical diseases entities and today what we are going to discuss basically is what are the issues there are that women faces and women in entity those are affected by entities their

Faces and what are the solutions because Maria and I both come from program uh side so we will bring our perspective and we’ll be providing you with some examples of solutions so gender and entities is this working gender and entities what are the issues why do we need to take talk about

Women in neglected tropical diseases so women are more vulnerable just next so what we found that women are more uh impacted and vulnerable to entities and and both men and women are are affected by NDS but women are affected more longterm more impacted more longterm and also they’re more

Vulnerable and this is for a a series of reasons the first one would be that uh the gender roles and responsibilities women in a lot of the communities that we work in are responsible for collecting water for cooking for looking after animals which uh increases their risk of exposure to neglect tropical

Diseases and Mar as Maria raised this point that gender roles and responsibilities in terms of women they are very limited and um that’s why they are all also limited to uh many different getting many different resources like financial resources or be it accessing health care or preventive

Measures so all those front they are lagging behind that’s why the socio economic and educational factors comes in play when uh it we are trying to uh you know Build a Better World for women and why they are lagging behind compared to men and Mita you mentioned the

Difficulty in Access this is very important for women we know that neglected tropical diseases and poverty is a vicious cycle so you can imagine for certain men it might be very costly to get to a Primary Health Care Center in communities where it’s not acceptable for women to move out of the household

Alone this would mean that they have to pay double fair for the woman and their accompanyment so that’s an an additional barrier that women face to be able to access health services thank you for raising those uh points Maria here and um next point is like they are very sus susceptible to

Discrimination and isolation I’ll give you one example from one of our project uh sammer project where we found out that women suffer more uh when it is comes related to social consequences of entities uh be it stigma discrimination and abandonment we saw adolescent girls who were affected by uh leprosy and

Other kind of diseases that also there with disabilities what happens is family often considers them as their burden because they can’t marry them off so these sort of Social and in the patrial structure where Maria and I work in Bangladesh in India these issues for women exacerbated it’s even more than

Compared to men then there’s the double burden of an ntid and this illustrates the scenario when the husband gets contracts and neglected tropical disease this how does this impact the woman so sometimes the woman has to stop working and becomes the primary um care caretaker of their husband it could mean

Also if the husband in the case of lymphatic filariasis there’s a complication called hydrilla which is the inflammation of the testicles you can imagine this creates um sexual health problems within the marriage and also sometimes women have to become the Breadwinners suddenly when the husband

Can no longer work so this is how uh neglect tropical diseases are a double burden for women and as Mar was also talking about how it is double burdening on women um we often understand also women’s often there are issues that other women understand but then they are

Also when it comes to Workforce in leprosy and neglected tropical disease they are minority women are minority in Workforce and they’re far often excluded from decision making on policy formulation or policy implementation process so we need to be that’s one of the thing that we felt that women are missing

Women’s voices are missing when it comes to Workforce working for women and um in in general decisionmaking process I think we both agree on this point Mita that the ntid world and in particular the leprosy world is a very malale dominated World in my case as a project

Manager for Bangladesh I work with 31 colleagues overseas four out of 31 are women and one is in a leadership position that’s 133% of the workforce and that that’s not only in Bangladesh that’s across the countries that we work in so then in gender and entities now

That we are talking about all these issues what are the solutions so next Point that’s what we are going to discuss what are the solutions we think so the first thing we need to do is realize women’s rights this is a prerequisite in order to achieve full gender equality without rights we cannot

Go to the next step and um for recently we have been conducting series of consultations with people affected in Bangladesh and India one of the things as a suggestion that came up is a gender lens uh when addressing entity specific issues I know we all talk about gender equality but

Equity but the areas we work with women are so behind if we don’t analyze projects and uh different policies with the gender lens women’s voices are not being heard women’s issues are not being presented so a gender lens is important when we are talking about socioeconomic inequity or other thing that hinders

Their performance and that will also uh ensure the successful delivery of entity programs we need to co-design which doesn’t mean just include some women’s voices it means peer-to-peer co-design with women inclusive and Equitable uh programs that prior prioritize women and girls we also have to ensure access to

Uh resources Maria is talking about co- delivery or coexisting but then also there are so many resources that’s not available for women be it education be Financial time constraint most women that we are talking about their Housewives so they are so busy when do they have time for Literacy for health

Seeking Behavior improving their attitude about health taking preventive measures so ensuring access to resources will enable them will open so many Pathways for them for empowerment and uh building their autonomy uh the fourth point is to plan for gender desegregated data collection and this is important because we need to

Understand where women are missing out how many male beneficiaries male people are we reaching how many women why are the women not interested in our services we need to keep on collecting data and split it between male and female so that we can know what the issues are and then

Uh design tailored solutions to these issues um now that when we are collecting the data then we also have to guarantee that representation and participation of women in decision making process in policy formulation and implementation which we detected as an issue in our previous slides but now we

Are talking about we have to ensure we have to make sure they’re at all level at all systems their voices are being heard they are included be that Community level be it at the national level District level or any uh or International level so that guarantee it’s also that accountability falls

Under us that that representation needs to be guaranteed and to be able to combat entities we really need to invest in female healthc care workers females are natural caregivers females are Educators within the communities we need to use females to be able to uh combat mtds without them we will not succeed in

Beating leprosy or any other entities so that’s an interesting point you said Maria about investing in female worker so I would I’m interested to know how are we going to invest in female Health work care worker do you have any real life examples that to share with

All of us it’s a perfect timing for this question cuz now we’re going into the real life examples in our programming so the first example of investing in female care workers is uh investing in ashas ashas are accredited social health activists in India and the idea why

Ashes were created was to connect the mar marginalized communities with the public health uh service in India so you can see the photo on the left this lady in the center is an Asha she’s part of one of our screening teams these uh three people go house to house

Screening the skin of uh men and women and children who are in the houses to try and uh prevent catch the early signs of leprosy and you can imagine if like in the photo in in the on the right hand side this is a village with um with

Women who come out to see who who are these health workers and you can see it’s all male health workers in this in the image on the on the right hand side um this is really not the best way to capture the hearts and Imagination of women women will not feel comfortable

Expressing their concerns or being screened by a group of men this is why we need women screening raising awareness in the communities it’s culturally appropriate and it’s the way forward so an Asha is an example of how we invest in female healthcare workers Asha is basically AC uh accredit social

Health activist that works in India um of course ASAS are of course an inclusive way to go ahead to yeah my question now I have a question for you so could you give me an example in our programming of how we can ensure access to resources of course Maria uh ensure

Access to resources I know pre previously I was talking about all kind of resources Financial um education and other kind of resources but now I will give you a very unique example here um so uh at lipra we do think about our people effects their long-term health so

And we believe that mental health is a is very important and very core to our work people with disability seems to develop depression uh other kind of anxiety and very U very critical mental health issues so here sh ensuring access to resources in mental well-being is very very important but then again will

I go up to anybody and share my mental health problems of course not so for example uh if a female is facing disability a long-term disability and has mental health issues there will be a friend likee person a another female person in a patriarchal setting they will feel much more confortable to share

Their problem with after few sessions of consultation they will start opening up that’s why our in Bangladesh we have mental motivators in India we have uh peer supporters where they talk like a friend talk like somebody next door who cares about you and then opens up and

That uh also after that we provide series of counseling training required and that’s how we are ensuring access to resources so there was one part we were talking about a very critical thing that guaranteeing their participation and representation it sounds also sounds so beautiful but how are we going to do

That Maria so here’s a real life example of our program in Bangladesh these group of people are the bogura Federation the ladies who are sitting down are all Representatives um of one 1,100 people affected by leprosy and other disabilities these uh people are elected to represent people with disability

They’re trained uh on uh leadership on group management on financial management and they can now sign post and uh uh access disability allowance and also become like political uh representatives of people affected in their District this lady in green uh sitting on the sitting on the closest to to me now

She’s she’s a force of nature she is uh committed to also in the screening of people affected she teaches the communities of what the signs and symptoms of leprosy are and she uh wants to find every early case of leprosy in her District so this is an example of

How women can be part of federations this Federation by the way there’s an equal representation of men and women so this is a good example that we would like to see spread across all of our programming and there I can vouch for Bia because I had a consultation

With taslima girl in red um hijab and she is a bold Fierce woman who know how to advocate for individual rights people with disability talking I felt she’s been born leader but lipra I felt somehow unleash that leadership that was hidden inside her to talk about her

Rights and advocacy so that’s an examp a wonderful example that I personally can relate to Maria thank you and finally we talked about co-designing program prrs what do we mean by co-designing can you give me an example so something strange happened this time when we recently just last

Month we all entire programs team went to India and we visited few um self-support group in Bihar so we had our consultation where everybody were talking but right after we had this consultation most women was coming up to us and they said they were very grateful that they received customer

Footwear but these sandals are doesn’t look like female sandals oh man’s chule man Footwear and they were not quite happy with that sandals I’m like what do you want what do you want it should be very very colorful pretty so that I can wear them in wedings I can go wherever I

Want and that sort of attractive one and what we realized because it came up in every self support group we went to and everybody though they are not related they are far apart geographically located not different diversely located they were all talking about man’s Footwear not for made for female so we

Thought that there is a lack what their opinion was missing their voices was not there when we were designing the Footwear they are of course those specialized footware were needed but it has to be from the very very beginning there voices need to be heard so we are

Trying now taking a different approach in kind of including them from the beginning of this process of Footwear understanding Footwear designing Footwear from colors to color palette to everything else design everything else yeah so we’re just wrapping up here are the takeaway messages of today’s session women are more vulnerable and are more

Impacted in the long term by NDS but women are also critical in the battle against NDS and we need equal access to resources Financial Social Security education and and healthare and we have to ensure representation of women at all level at all system without wom we’re not going to succeed in any Global

Challenges peace climate change but also in our area of beating ntds we’re not going to achieve the SD um sustainable development goals or achieve any of the milestones in the NTD road map we have to have women involved in all the processes and and we here we are women

In lipra and I’m so so proud to say we are all women 100% women in programs team at Lia UK and they are all our colleagues from India from Bangladesh as you can see the colors we are all proudly representing lepra and we believe that change begins with us and

Here we thank all of you for being here today and here we have our email addresses if you have any questions comments for us please do let us know and if you have an Innovative idea please don’t hold them back email us and let us know how we can be more

Inclusive in our programs thank you thank you so [Applause] much hi manik can you please introduce yourself to us foreign fore speech fore forch speech foree foreign forign spee fore foree foree foreign spee foreign fore foreign for speech speech foree spee foreign foreign uh she she is one of our secretary of

Our self-care group now and uh there are 26 uh self-care group among this area where she is belong and uh she is helping all our self-help group members uh to be uh on their own and uh to how to be uh good and she do a lot of of counseling with

Them mental counseling so that they can feel good and they can uh stay healthy and wise thank You thank you she being a member of of our foundation um bogura foundation and self-help group she went to India and attend the ltcc ilc meeting H where she give her speech in sasakawa uh the global meeting in arranged by sasakawa and she also went

To Manila uh Al to attend the ilc there and uh in during the global meeting arranged by sasaka there also she give her speech uh how she is uh from the beginning till now her life Journey thank you hi manik can you please introduce yourself to us hi madam Morning For For For M Fore For For For For For For for we get the Q&A s nice I think the easiest way for us to do that is for each person here to introduce themselves and to just say a few words about how they are involved with lepra or working on leprosy so if we start with Jimmy the honorary

Man thank you very much my name is deis and I’m the CEO in the UK do you want to say a few words about I’ll say a few words say a few words and then we’ll take some questions okay great so um see if we had any answers I

There’s I think those videos we saw are great um and the woman makuda who you saw with her cow there in Bangladesh I met her when my first trip to B Bangladesh visited her in in that in that home where she was recording the video and she left such an impression on

Me at that time and seeing her video again now I mean what an amazing woman Maria earlier talked about another lady’s being a force of nature Max Sudo is also a force of nature I was taking notes about what she said just now because I was thinking about what to say

And then I watched Max on the video and she just inspired me she talked the challenges that she talked about in her private life in her relationship the emotional impact of her diagnosis the economic hardship that she faced the outcast people wouldn’t talk to me the loneliness that she

Felt these we we we hear these challenges all the time from we were affected by leprosy in India and Bangladesh I’m a lucky man I get to visit our programs in person and meet um our project staff and visit our project sites in the areas where the communities

Where we work meet people like mauda and I’ve heard so many stories like mauda the challenges that women affected by leprosy and F face they’re really hard to explain how profound they are and then you come across forces of nature like mauda who said you will find

Your courage you will find your way in life there a woman who’s not going to be put down by anyone or anything I just think it’s a really powerful message that I wanted to to reinforce and I wanted to reinforce another powerful woman’s message a powerful young woman

So last week the week before it was half term here in Essex and my daughter my youngest daughter Amber who I hope is watching the live stream right now um came to my office um which she loves doing and I tasked her with doing a poster for this event International

Women’s day I gave her the theme gave her some of our um our magazines and brochures for her to learn about lepra and leprosy and to make a poster and she made this poster and I wanted to share it to you I’ll describe it in case you can’t see it

Clearly hij and above there’s a heart and a star to the side of her head and above her it says into this s of women’s day 2024 then Amber’s message underneath reads women affected by leprosy are strong women they have overcome many challenges in their lives challenges like the find that Max is

Telling us about what I can say as a privileged white male CEO leer is that these challenges are real and they’re profound and the resilience displayed by women affected by leacy everywhere is unbelievable and wom been affected by Ley challenges are hard to overcome um as Max says you will find

Your way and that’s a great message for us all St fors thank you thank you Genie uh thank you everyone uh for having me here today um I’m kamun I’m from Bangladesh um I am a researcher by profession based in Bangladesh and I’m now doing a PhD uh

With lepra and University of ax with the uh people with NE tropical disease and my uh area of research would be exploring uh the mental healthare seeking Behavior and the perception of the human rights uh for the people who have leprosy and lymphatic fasis some of the major negl tropical diseases back in

Uh Bangladesh so um this is a very new area for me in terms of uh leprosy and lymphatic fasis I just started last October so within this five months I have learned that uh these are the people who are uh very marginalized belong from a very poor community and

Since they live in a very uh close uh uh space um and due to having lymphatic fosis or leprosy they have to go through different kind of discrimination based on uh the preset stigma and gender Notions and especially uh the women uh as we have seen throughout the all

Presentations today they have the double burden of the diseases is not only they have the microbiological conditions but also they have um the other uh like comorbid conditions such as mental health um since I my expert is in mental health research so I would put more

Emphasis into that because um me men and women both suffer from leprosy but women suffer a bit more because um they are expected to do their household chores even if they have the hidden pain they have the hidden dis visibility um and how much resilient they are that even

After they suffering for a long time but they would still expected to do the U their household chores you know maintaining their kettles also their children and one of the other uh problems that this uh Woman face is that uh even if they have these kind of

Problems they don’t go and seek care until this is a very complicated uh you know situation because it’s not very easy for them to access healthare um and show their private bir to someone who is a male you know sitting in that uh you know uh hospital it’s not easy for them

Um and number three is when they even uh come back home uh because they live in a close Community not only they have to go um uh uh um to um through different kind of abuses from their husband but also from their extended family and and the

Social um Community they have to be isolated they don’t even go to the social events so all of this put together a a great mental health burden and you know um the their quality of life is compromised and since uh the woman at the center of the family so the

Whole family uh um is affected as we have heard from these two powerful women with lived experiences they both have um put emphasize how their family life was affected so um as uh I would put emphasis on uh what Mita and Maria spoken about um about co-designing uh

The programs including um the gender and ensure their U Equitable voices so I I would also um ensure that um not only uh involving them uh into the uh program would uh uh you know uh would help but also we need to do some anti-stigma campaign we have to involve the family

And also the community leaders so because uh not uh they have the women have to go through different kind of stigmatization and different level not individual family and the social level so we have to do a like prominent uh stigma anti-stigma campaign and also um to uh do like well-being um and

Rehabilitation program for them because even if they’re microbiologically cured but their wellbeing is still compromised after even their uh you know they don’t have the leprosy um uh microbiologically so we have to you know keep talking about that we have to have these kind of

Programs not only in UK but also back in Bangladesh and India so that you know and and to the affected areas IND mic PR area so that you know the the community knows that this are the normal problem and this will be cured and you know it’s

Absolutely normal to talk to this zoen and and support them thank you so much thank you uh hello everyone so I am s bin I am one of the trustees of the lepra board uh so let me tell you I joined the lepra board around 6 years back and uh before

I join when I was told about this position I said why are we talking about leprosy that has been eradicated long back and that was my surprise that you know I’m supposed to be quite well educated I know the world Ive traveled around and here I am not even knowing

That this disease is still around and for me that was a big thing one of the questions that I was asked when I joined uh the board at my interview was uh why do you want to join lepra and I said well it because it takes to two boxes

One in my head one in my heart and the head one was because I was coming in as the chair of risk and finance and I’m a finance person by background so love numbers and it makes more sense very very sad life but uh anyway uh and the

Second one was it takes my heart because I suddenly remembered that when I was a child my mother used to volunteer in a leprosy colony in back in biar because I come from Bihar and and for so for me it was absolutely no-brainer joining lepra so coming back to today’s topic which is

About resilience I will talk about two of the ladies whom I met I met number of ladies uh when I have gone to various programs in India but two of them really stand out so one was a very young girl she was around early 20s and I met her in one of

Our uh hospitals leprosy hospital near the Nepal border and they were telling me her story that uh she was diagnosed with Leprosy when she was around 16 years old it was a shock to the family the parents were absolutely you know petrified what’s going to happen this

Girl is never going to get married everyone will know that she’s Le has leprosy so you know the life is finished so I spoke to this girl and I said how did you feel when you know when you were told that you know you have been diagnosed with Leprosy so she said that

You know the doctor had told us that I will be cured so I was not really worried about that and what a strong girl right so and then I said and what about you know the fact that your parents were so worried that you’re not going to get married because think about

It it’s rural India uh a girl gets you know born gets born and then she grows up hardly has a little bit of education and then she is married off that’s a life right and I said how did you feel and she said I was

Very happy and I said why she said if I don’t get married I’ll get to study and I said my God look at this girl I mean what an amazing woman and that is what she did she actually studied lepra helped her and she is now

One of our medical assistants and I have seen her in in a in a sort of a you know in our Hospital uh uh laboratory working with clients working with patients working with doctors an absolutely fantastic woman and the second one I’ll go back to what Mita and Maria showed

About that borra foundation and the girl in the red hijab okay so I go to borra foundation and then this is again very hardcore rural Bangladesh um and I see a lot of men in that Foundation but suddenly I’m surprised to see a lot of women also and then they say okay we

Will uh make a presentation to you and uh and then they were thrilled that I understood Bengali so they said okay we don’t have to translate you can understand what we are saying great and I thought okay one of the older men will stand up and give the presentation and

There was this lady in the red hijab in that picture stood up gave a Flawless presentation and I also happened to be a leadership coach and I left I when the presentation was finished I went to her and I said you can stand up in any corporate boardroom because you are so

Confident and you are so amazing she put her words absolutely clearly and then she told me her story and she said 5 years back I never stepped out of the house okay if I had to step out of the house it was only for family functions

And I used to always be accompanied by either my father or brother or husband or some someone or the other and then she was diagnosed with Leprosy and then you know the lepra uh the field workers they started talking to her and she got very interested and good to to your

Point she got very very interested about understanding that there are rights attached to this you know that you have this disease or you are incapacitated so you can have some rights and she got to understand more and more and now she goes to the local bureaucrats with her

Two friends and demand stuff the girl who never stepped out of her house is resilient enough to understand her rights and goes up now on her own to demand her rights I mean for me it was like wow so I feel you know I’m very

Proud to be a woman of course and I feel I am quite a strong woman but when I meet people like these I get a lot of strength from them so for me that is my journey and it’s an amazing journey thank you I I’ll be very

Brief um first of all reintroduce myself I’m Judith BR de masca I’m co-deputy director of the human rights Center um and I’ve worked in the human rights Center in the law school for about 20 years here um focusing on global health and human rights um but before that um

You know at the beginning of the evening Jimmy and I were talking and Jimmy was talking about how you know there’s so many you talk about leprosy there’s often the sort of perception of all these negative stories and experiences and I think um you know all the presentations today and the the

Anecdotes and the personal stories and the experiences of lepra Staff just highlight the inclusion and the empowerment in a way that um you know through difficult circumstances which weren’t planned has somehow has somehow um occurred um you know through through adversity um so we’ve had Di’s

Experience in terms of the sort of um public health and sort of pharmacological side of it if that’s the right word um so what about what about human rights um well over the last of 20 to 30 years human rights and law have become much more integrated into Global

Health practice and law is a um is a um you know important determinant of Health um and throughout the world um equality and non-discrimination has been embedded in National laws doesn’t mean it’s always is respected but at least it’s there um as as a norm um which should

Guide policy making it should guide um local institutions um and it should should should guide um Community um initiatives um and I and I think in this context we’ve really seen um at all levels in terms of the national policy in terms of the institutions provision of care with um the through through

Lapra and through other institutions and through the community um and and through the the effective populations how equality and nondiscrimination has been Advanced um and the important of course importance of course of equality and nondiscrimination in the workplace an important role um and value of having um

Women in the workforce to advance gender equality um and I think two other things that I want to just uh reflect on two other sort of key features of Human Rights um and what they bring to Public Health um one of which um is is participation um that’s not to say that

You you only have participation when you’ve got a human rights based approach approach as well ingrained in public health practice very often but not but but not always um and to recognize that it is a right um and that people as you were just talking about have the right

To go and demand demand things um you know I think that’s very important contribution and the other other one um is accountability so because Duty bearers do have these responsibilities it’s important to be able to hold them to account for for for what they’re meant to do and provide I think I’ll

Stop there um thank you we have a few minutes so um and I don’t know whether we’ve had any questions online but I’ll first see if there are questions in the audience any questions or comments yes please what are the signs sorry can you speak up signs and symptoms okay and what

Ination Diana I know you’re not on the panel but the question really is a medical question do you want to answer that do you need a microphone got a microphone okay I think you need one for the room itself did you hear the question uh yes

I did okay question was was about the the signs and symptoms of of leprosy and the incubation period yes the uh the signs and Sy symptoms of leprosy are very variable so people present with a whole range of skin Le ranging from small pale patch through to nodules and

Infiltration they can also present with uh involvement of their peripheral nerves so they they can have uh um uh loss of sensation in their hands and feet uh and weakness in their in their hands and feet and it’s these uh the involvement of the nerves that means

That uh you’re at damage of getting you’re risk of getting damage to your hands and feet would leprosy and that’s one of the the classical aspects of it and the incubation period is very variable so the incubation per uh V varies from a few months to 20 years yes

Please Diana would you want another question to Diana okay Diana don’t go away what is your question yeah um I would like to know if there are any specific um conditions that make women more vulnerable to the disease itself or to contract the bacteria itself rather than just of course what we’ve spoken

About the the social determinance of of the of the disease but if there are any medical aspects that make women more vulnerable to it uh I can give you a two-part answer to that the the first is the good news that actually um more more women don’t get leprosy so actually the

They’re slightly so there are equal numbers of males and females uh getting leprosy until puberty after puberty there’s a slight excess of males getting leprosy um we don’t know whether that’s also due to uh more better case finding for males but um certainly the um uh

Women are not more at risk of getting LS the bad news is is that uh women after pregnancy are risk of getting these these reactions and the inflammation in their nerves and so this is a very well recognized part of the of the leprosy problems um so yeah so that’s yeah

That’s your your answer yes can I take the woman with the glasses and the black sweater I think so we talked a lot about the issues that impact specifically on women but I just wonder there’s so much to take in there what do you think would be the one thing

That would make a real difference if we were able cheap anybody have the answer to that question what’s the one thing RS to me rights um Maria Marita also I think they devop is their number one solution realize rights you know my grandmother’s generation was the first wave fism demanding the right to

Vote and property inheritance and ear my mother’s generation was a second way with feminism in the 60s and 70s fighting for equality of society My Generation has pushed that on in many ways in so many great ways but there’s still so much to do my daughter’s generation is going to have to

Continue the realization of equal rights in society for for all for all genders and it’s it’s a sad but true situation the challenges that you’ve heard about this fight for women affected by leprosy like Max in the video and others we’ve heard about they are compounded by the

General uh um position and rights or lack of rights that they are able to enjoy experience and inclusion in their societies whether it’s because of the patriarchal system or the economic franchisement or the lack of access to education so many reasons compound the the extra challenge the Dual challenge the extra burden

Challenge of ofs diagnosis so the sooner we realize equal rights the more impact we’ll have for women and I think lady next to you also have question go ahead since the them was resilience I’m sorry I can’t hear you can you hear me now Contin you a microphone sounds like a good word

Microphone sorry rile voice um since the them is resilient and it leprosy is a bacterial infection that’s treated with three antibiotics since antibiotic resistance is becoming the huge thing and since in 20 to 30 years we expect most of the antibiotics listed there work anymore do

You think leacy is going to be a bigger issue going forward for everyone Diana do you want to talk about Poss new drug treatment that we’re looking at supporting in that do you want to uh thank you um you’re you’re you’re very preent to worry about about resistance at in

Leprosy um we’ve been very lucky because we’ve actually seen very little resistance to rampin which is highly bacteriocidal for for microbacterium lepry um there’s a lot of resistance to DAP Zone uh and who uh were very they’re preent in saying that all leprosy patients should be treated with com combination of

Either two or three drugs in 1982 we’ve now had 40 Years of combination treatment and we’ve actually got very little resistance which we’re very lucky about but we do need new antibiotics for for leprosy and and one of the things that we should be doing is testing uh

New regimens and and we could have other regimens with with fewer adverse effects I just want to check if there any questions that have come in online line no um is there another question please we’ll make this the last question and I know there’ll be time for people to just

Walk around and talk to individuals so please go ahead I just want to thank you for such an inspiring and ask for introd support wom program about today well um I I could start off by saying supporting lepra which is in Colchester uh would be the first thing you’ve got the

Information there you can always contact us and we’re always always happy to have people support us so don’t be shy coming forward Jimmy do you want to add to that yeah I think obviously you can visit our website and there’s lots of information there if you want to get involved in any

Way in any way you feel comfortable to but Mar who said anyone wants to talk us and talk to us and be more than happy to have a conversation with you and to explore how he I think now I’m going to bring this

To an end and um I just want to thank a few more people one of them is Harley Ward um who basically uh from the University of um eics events who’s worked closely with us and been our link to make this event happen so over to you for a big round of

Applause and I want to thank the University technical team for live streaming and recording um all our speakers the people who uh NOA and indrani who filmed and translated the videos and Chris Lang um of lepra UK for the editing um and basically thanking all of you here for giving up your

Evening I hope that you found it inspiring uh the women you have heard about have been extraordinary and their stories show that even in the darkest times sometimes that’s when you have the brightest Spark so I’m delighted that you’ve been able to come with us and let

Us share with you our experience of working with these women through Lee UK and our sister organizations so thank you very [Applause] much well can I um thank you suan thank the panel um what what a night I’m sure you will feel as inspired and blown away as I did

I certainly came here not knowing a lot about leprosy and one of the first things I’m going to do is take the invitation about visiting your your website and and and finding out more so thank you lepra for this wonderful idea of hosting a joint event for our significant anniversaries we have really

Enjoyed working with you on this event and here’s to many more um events as part part of our partnership um I want to thank our speakers each and every one of you our panelists for your time and contributions to the event those incredibly inspiring women we heard via

The video thank you to all who attended um those of you in person those of you online and goodbye um from us um to everyone across the world um I’d like to invite you all to share with us some refreshments some drinks and really have the opportunity to network as well

Before we um have a a clap for everyone I do want to um reiterate um Suzanne’s thanks to Holly Holly and her team are absolutely quite stupendous in how they manage all of us and make these things these magical things happen so Holly all the San people all her team many thanks

Thank you [Applause] everyone join us outside you