Meet the faces of the Leprosy Insights Magazine

Throughout this edition of the Leprosy Insights Magazine, you have seen the faces of persons affected by leprosy, persons with disability, and our in-country staff. Their photos have been used to illustrate the points being made in the articles and to help you to connect with what we were saying.

Of course, there are real people behind those photos, so we wanted to give you a chance to read about their lives so that they become more than just a photo.

Amina, Nurse with The Leprosy Mission

Hello my name is Amina I am a nurse here at TLM Muzaffarpur Hospital. I live here with my husband and my father-in-law. We moved here from TLM's Hospital in Salur.

Whenever I meet the patients they tell me their situations and problems. Some people that come here are rejected from their village and from family and when I listen to them I feel really bad and I know I can't always help them. But here at TLM we pray for them and the patients feel here they will find a solution because we care. They sometimes come here for just sympathy; it relaxes them… just listening to them helps a lot.

Gita Mridha, Bangladesh

Gita Mridha received treatment after coming to a skin camp. She said, "The doctor told me that if I take a dose of medicine, I will recover. If they give me medicine, I will take it. As I am very poor, I cannot afford the medical cost. They are giving free medicines, that’s why it’s very helpful for me. If I see people around me with this disease, I will tell them to come to the doctor and take medicine. I will make them aware of this".

Ancha Albina Mussa and Florêncio Geraldo, Mozambique

Ancha and Florêncio are volunteers at media hubs built by The Leprosy Mission in rural communities of Mozambique. The hubs are used as a meeting place for savings and self-care groups and also as education hubs where people can watch films showing health information and get advice from community health workers.

Ancha

I joined the leprosy management committee last here as a mobilizer for the media centre. But when I was about to start working the war came and we fled [with her husband and daughter]. We only returned now.

Every day I leave my house, come to open the centre and call people to come and see the theatres and videos, like the ones that teach how to weed, how to make compost, and how to do other things. On the projector, we usually watch at night and during the day I bring people here and show them on the phone.

I am enjoying this work and I think that it has a future. We can help and change people's lives. I, for example, didn't know how to preserve the products of the farm. Now I know, I’ve learned from the videos and I have already explained it to my group and now they can do the same.

Florêncio

My everyday life? One day I go to the machamba (small local farm) and the next day I can come to the centre very early to clean, set up the chairs, receive people and explain how the media centre works and what is happening. We are very grateful because many things are already changing. Many people, for example, did not know this way of building houses and we couldn’t build the way we used to. We must have latrines in the houses, otherwise, the mosquitoes can contaminate us and bring other diseases like malaria and diarrhoea.

"The videos have stories in our local language. We have a story that explains when we harvest a crop in the field and teaches how to use natural products instead of chemicals for preservation. The videos teach people a lot about how to do many jobs better. I think that my work is very important not only in my community. It is very important to go to all the communities to talk to people affected by leprosy so that they can be cured, like me. I was affected, I went to the volunteer, I took the pills and I am already well.

When I arrive in a community and people say that leprosy has no cure, it is a pure lie, it is not true. I had leprosy, but I medicated and now I am well. I did not lose any limb of the body! My story helps me and gives me a lot of will to work here.
Photo credits: Ricardo Franco

Rachna Kumari, India

In this photo, Rachna is alongside Mathias Duck, The Leprosy Mission's Global Advocacy Lead. They were attending an NTD-focused event at the UK's Houses of Parliament, where Rachna told her story. This is what she said:

Lords, Ladies, MP’s and Esteemed Guests,

I am pleased to have been invited to speak to you here today, to share with you some of my experiences as a person affected by leprosy. My name is Rachna Kumari and I am from India. I am happy to inform you that I have been cured.

My life with leprosy began in 2008, as a young mother of 24, with two little children. The diagnosis was a shock for me and my husband. I received very little information about how the disease might progress and no support on how to manage the medications. Within a year of my diagnosis my husband passed away suddenly. I was a widow, very ill and with no way to support my family.

Although I received treatment, I suffered from leprosy related complications and extreme pain for the next 8 years. This is because I was not diagnosed and treated soon enough. During this time I have suffered discrimination, internalised stigma, depression and suicidal thoughts.

As a woman and young mother, I faced a great deal of difficulty. When I was first diagnosed with leprosy my husband advised me to stay with my mother and paid for my treatment there, as he feared that I would not be accepted by his family.

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When my husband died, my in-laws refused to support me or take me back. They did not want a daughter in law who had marks from leprosy on her face. They were ashamed to take me to social functions and attract the attention of the neighbours. They were also afraid of getting leprosy from me and refused to let me stay in the family home, even though I was no longer infectious. Till today I have not been given my husband’s share of property. I am still fighting for my rights in this case.

I tried to work and support my family, but the leprosy reactions would make me very ill and disfigured my hands and body. I stopped attending social functions or meeting people and would hide my face with a scarf when I went out. I was afraid of how people might treat me if they found out I had leprosy.

The feeling that hurt me most was that being a mother, I could not be there for my children when they needed me. I was very worried that my children would get this disease from me and would not hold them and hug them. I spent so many months in hospitals and have lost important years of their growing up.

The biggest change in my life came when I received holistic treatment not for just for leprosy but as a person affected by leprosy. I received treatment for the long leprosy complications and counselling for my mental health- my anxiety and depression. I was given hope and support to find a job. This gave me confidence and dignity. This gave me a will to live and make a difference for other women like me.

Leprosy is a disease that can be easily cured if diagnosed and treated early, but its complications and effects are life- long. People affected by leprosy are working together to tackle the stigma and discrimination faced by many. For example in my home state of Bihar , the State Forum of leprosy affected people successfully advocated for improved disability pensions for people with leprosy- related disability and are fighting for land rights so people affected by leprosy are not unfairly evicted.

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Leprosy can be ended for good and it is something that we can do in our lifetimes. This means strengthening health systems for early diagnosis and treatment and supporting people with life-long leprosy related complications. It will take hard work, investment and co-operation from everyone, including governments around the world. But it is possible; we have the tools to make this a reality.

The UK can and is playing a role in that. I hope that you will join us and become a part of doing everything we can to make sure no one is diagnosed with leprosy again.