“I am happy to be part of this programme, which is trying to help people like me who have been suffering,” says Rebecca Ayuba.
Rebecca, a mother of six, is just one of the thousands of people who have been helped by the COUNTDOWN programme. This major research programme, which ended in October 2021, focused on several neglected tropical diseases (NTDs) that disproportionately affect some of the world’s poorest people.
The aim was to encourage people to speak out about their illnesses and how they would like to be treated, enabling researchers to investigate cost-effective, sustainable ways to control and eliminate these diseases.
The programme took an innovative approach that involved designing solutions together with, instead of on behalf of, local communities.
Shuaibu Abdulkadir, a 45-year-old farmer from Nigeria with lymphatic filariasis, says: “It is a thing of joy to be part of something that would help other people who may be suffering with skin-stigmatising diseases like me.”
Luret Lar, research manager for COUNTDOWN at Sightsavers, says: “I have really enjoyed working on this programme. It has been exciting to find out more about the needs of people with NTDs, and how we can improve the health system so they receive better care for their conditions.”
This major research programme, funded by UK aid, spanned four countries: Nigeria, Liberia, Ghana, and Cameroon.
Sightsavers has carried out COUNTDOWN research in Nigeria led by the Liverpool School of Tropical Medicine, with the health ministries of Kaduna, Kwara and Ogun states.
The programme has contributed to our collective knowledge in several areas, from studying how frontline NTD health workers have coped during the COVID-19 pandemic, to shining a light on lesser-understood conditions such as female genital schistosomiasis (FGS). These lessons could bring us closer to achieving the targets in the World Health Organization’s 2030 roadmap for neglected tropical diseases, including eliminating many of these diseases for good.
One notable study involved finding ways to manage the symptoms and psychological impact of skin diseases such as lymphatic filariasis and leprosy. The stigma that comes with these conditions can have a devastating impact on those affected, as well as their families and communities.
The Wellbeing study brought people with skin NTDs together and helped them to create a series of support groups. These groups acted as a positive environment where participants could support their peers and build networks, as well as sharing their experiences with those in positions of power.
At the beginning of the study, Abdulmimini Hussain, who has leprosy, said: “We are not allowed to live where other healthy people stay, and I am not happy seeing that we are separated from others.”
After several months of attending the groups, participants reported feeling a greater sense of confidence and wellbeing. “I have learned to live together with people and be proactive and do something to improve my health and livelihood,” said Esther Musa.
Another group member, Koto Yerima, added: “The group members see the group meetings as a place to talk, and are free to talk about how they feel.”
Researchers are now joining up with policy makers and health workers to ensure what they’ve learned is put into practice. Over time, this could improve the lives of countless people worldwide who are at risk of neglected tropical diseases.
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