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“Taking photos helps people to understand our problems”

People in Nigeria with diseases affecting the skin have shared their photos as part of a research project into how these conditions can be better managed.

“When I was healthy, I used to help people to do their laundry and get paid. Now, because of the way my fingers are, I cannot. I feel very sad. I really wish and pray to God I get the help to get well again.”

Modinat, who has leprosy, is one of about 40 people with NTDs and their caregivers in Kwara and Kaduna states in Nigeria who have been trained to use photography to share their stories of living with skin conditions such as Buruli ulcer, lymphedema and hydrocele. Over the course of two weeks, they took photographs within their communities to capture their experiences. They were recruited as co-researchers as part of a wellbeing research study for the COUNTDOWN programme.

Their photographs and stories were then gathered for an exhibition emphasising the stigma that is often faced by people with these conditions, and the social and mental burden that this can place on them and their caregivers.

“The pictures help me to showcase my problem and challenge in life,” explains Modinat. “The pictures show I need help. It has really helped me to be able to tell the world my problem that I have been keeping to myself.”

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A man rests his head on his hand, and looks at the camera sadly. — "I took this photo because of what disturbs me," says 25-year-old Aliyu Yusuf, who has a wound on his leg caused by Buruli ulcer. "I have been separated with my family by other family members and was given a different room away from everyone."

A group of woman are farming in a field of green vegetables. — "This photo shows my daughters helping me on my farm," writes 40-year-old Adamu Sabi, who has leprosy. "I can’t work on my farm because of my condition."

A man sits in a blue chair, next to a desk. The man was wearing a white shirt. The desk is piled high with books and folders. — Alhassan Musa, who has lymphedema, says: "This is a photo of our doctor. This man always treats me nicely and makes me feel respected."

The photos at the exhibition show the devastating impact that neglected tropical diseases (NTDs) affecting the skin can have.

Abdulmimini Hussain, a participant with leprosy, says: “We are not allowed to live where the other healthy people stay, and I am not happy seeing that we are separated from the others.”

Other participants described losing their livelihoods as a result of their illness. “I took this photo because of my ill health,” explains Saidu Isah, who has leprosy. “I am idle without a trade or any activity to keep me busy – it shows that I beg for alms to earn a living.”

Participants also mentioned the support they received from family, friends and others in their community. David Irimiya, who has lymphedema, says: “My wife takes very good care of me. Whenever I am unable to go to the farm as a result of ill health, she takes up the responsibility of working on the farm.”

A woman, wearing a black headscarf and a white shawl, looks into the camera. — Rebecca Ayuba, a mother of six and 'a grandmother of many', who has leprosy, says: "I am happy to be part of this programme that is trying to help people like me who have been suffering. No one in the past has been paying attention to us."

The stories were gathered alongside other projects as part of the COUNTDOWN research programme, which aims to investigate ways to control and eliminate the most common neglected tropical diseases.

This wellbeing study used a community-based participatory research approach. This involved using ‘photovoice’, where members of the community affected by skin NTDs were trained and supported to record their experiences in words and pictures. The photovoice process was used to identify challenges and promote collective action so that people affected can begin to address these challenges.

This method provides a way for local communities to take an active role in shaping research projects. Sightsavers research analyst Tosin Adekeye says: “We can’t see ourselves as the all-knowing researchers; instead, we have to learn from those who are affected.”

Shahreen Chowdhury at Liverpool School of Tropical Medicine says: “This project has highlighted how powerful photovoice can be in amplifying the voices of people affected through sharing their own stories, but also in taking ownership by leading and actioning positive change.”

The accounts have also left a strong impression for those who have been involved in the project. “Photovoice research has opened my eyes to the plights and yearnings of people with stigmatising skin diseases such as swollen scrotum, lymphatic filariasis, leprosy and Buruli ulcer,” says Afolayan Olatunde James from the Kwara State Ministry of Health.

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Two pairs of open-toed women's shoes lie on a stone floor. One pair is black, while the other is grey. — "This is a photo of beautiful shoes with heels," says 18-year-old Fatimah Agee, who has lymphedema. "I can't wear them because of my swollen leg. I feel unhappy because I bought these shoes when I was healthy, and I cannot wear them again."

A man, wearing a blue shirt and a hat with a white and grey pattern, smiles at the camera. — Ga'aje Saleh, who has leprosy, writes: "This is my husband. I took this photo because he always supports me. Since I fell sick, he has never shown any sign of disgust towards me or avoided me. Instead he takes care of me."

Pictured is a single-storey church building, with brown walls and blue doors and windows. On the church roof there is a small cross. — David Irimiya, who has lymphedema, says: "When my legs ache and the pains become unbearable, I go to church for prayers to be made for me. I hope to get completely well some day."

A group of men and women stand outside, in the shade of a large tree. — The research team and the co-researchers for the Wellbeing study in Kwara state. One participant says: "I have a better understanding that a picture is not only for memory, it also has a voice to communicate to people so they will understand our experiences."

The project is now taking its findings further by involving people with NTDs in leading and shaping a series of support groups, with the support of state NTD programme implementers. These groups will bring people affected by NTDs together, providing a positive environment where they can receive peer support and build networks. The groups will address issues raised from the research, providing guidance on areas such as disease management, vocational training and psychosocial support.

Adekeye says: “It is really exciting to see the people affected as co-researchers driving the support groups, deciding when and where they will meet, and setting the agenda for their meeting.”

Adekeye explains that support groups will run in Kwara and Kaduna states for the next few months, providing guidance on areas such as wound care, treatment, and psychological wellbeing. The idea is that the support groups will gather momentum and that the affected people will continue to meet after the research project ends. Co-researchers will continue using photovoice as the support groups are implemented, in order to document the process.

The project will also look at the wellbeing of the participants before and after the series of support group meetings to determine the impact the support groups have had on stigma reduction and psycho-social wellbeing.

Adekeye says: “Our hope is that the groups will improve people’s wellbeing and reduce the amount of stigma that they experience, making a positive impact on these people’s lives.”

You can see more of the photos from the Wellbeing project by downloading the Kwara photo booklet and the Kaduna photo booklet.

“Our hope is that the groups will improve people’s wellbeing and reduce stigma”

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Neglected tropical diseases

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“Taking photos helps people to understand our problems”

People in Nigeria with diseases affecting the skin have shared their photos as part of a research project into how these conditions can be better managed.

“When I was healthy, I used to help people to do their laundry and get paid. Now, because of the way my fingers are, I cannot. I feel very sad. I really wish and pray to God I get the help to get well again.”

“Our hope is that the groups will improve people’s wellbeing and reduce stigma”

Want to read more about our work?

More stories from the field

“Our programme has transformed communities”

“We’re playing a critical role to banish trachoma”

Captain Clean: teaching children about hygiene through games

Protecting sight, fighting disease and promoting equality for all

We protect sight, fight disease and make sure everyone can claim their rights.

Find out how your support can make a huge difference and change lives.

“Taking photos helps people to understand our problems”

People in Nigeria with diseases affecting the skin have shared their photos as part of a research project into how these conditions can be better managed.

“When I was healthy, I used to help people to do their laundry and get paid. Now, because of the way my fingers are, I cannot. I feel very sad. I really wish and pray to God I get the help to get well again.”

About the Wellbeing research study

About COUNTDOWN

“Our hope is that the groups will improve people’s wellbeing and reduce stigma”

Want to read more about our work?

More stories from the field

“Our programme has transformed communities”

“We’re playing a critical role to banish trachoma”

Captain Clean: teaching children about hygiene through games

Protecting sight, fighting disease and promoting equality for all