Socio-economic wellbeing
Koffi Nyako and the long road to ending stigma
"Our goal is for the next generation to grow up without stigma and for people to understand that leprosy can affect anyone, that it is curable, and that treatment is free."
Koffi Nyako leans against the wall of the community space where one of his organisation’s awareness-raising activities is being held. He appears to be reflecting on the long road that has led to him becoming the president of IDEA Ghana, one of the organisations for people affected by NTDs that the Anesvad Foundation supports in the West African country.
Koffi was born in a small village in Ghana, and at a young age faced a challenge that would mark his life forever: leprosy. At the age of seven, Kofi began to notice strange rashes on his skin. At the time, neither he nor his family knew what it meant. “They were just like any other common rash,” he recalls. However, it was not until thirteen years later, at the age of 20, that he received a proper diagnosis.
The diagnosis came as a relief: at least now he knew what to do. But it was not the end of the road. On the contrary, Koffi found himself in a world that rejected him because of his disease. Leprosy, shrouded by myths, prejudices and stigma, led to him becoming socially isolated. “When people saw my deformed hands, they thought it was contagious,” Koffi explains, with a mixture of sadness and resolve.
But Koffi did not give up. After finishing secondary school, despite the ridicule and discrimination he faced, he won a scholarship to study in England. He recalls with a wry smile how his geography teacher, who had refused to collect one of his school assignments from his deformed hands, was stunned to see him at the passport office, preparing for his trip. “I told him I was there to pick up my passport to go to England. He couldn’t believe it,” says Kofi, seeing it as a moment of personal vindication.
On his return to Ghana, Koffi decided that his experience would not be in vain. He began working to integrate people affected by leprosy back into society, initially by travelling from colony to colony by bicycle, talking to people about the disease and how they could live with it. This work took on a more formal character in 2005 when he founded IDEA Ghana, an organisation dedicated to eradicating the stigma associated with leprosy.
Koffi and his team have faced titanic challenges, but they have made significant progress. Thanks to their efforts, there is now much greater awareness and understanding of leprosy in Ghana. “Everywhere I go, people come up to me to shake my hand because they have heard my story on TV or radio,” he says proudly. “People know that leprosy is curable, and although some people still have disabilities, the stigma has diminished considerably”.
Through awareness and education campaigns, IDEA Ghana has helped many Ghanaians recognise the symptoms of leprosy and seek treatment early, thus preventing permanent disabilities. “It used to be that people would come to the hospital too late, already disabled. But now they know that any spot on the skin needs to be examined,” says Koffi. Even in remote regions, where leprosy can still be misunderstood, education has changed people’s perceptions.
The Anesvad Foundation provides essential support to organisations who work with people affected by Neglected Tropical Diseases (NTDs), such as IDEA Ghana. This support not only involves financial resources, but also technical and strategic assistance to strengthen the capacities of these local organisations. Partnering with Anesvad thus enables groups such as IDEA Ghana to develop and implement NTD awareness and prevention programmes, improve the quality of life of those affected and combat the stigma associated with these diseases. As a result, community-based initiatives in Ghana can achieve greater impact and move towards the elimination of NTDs in the most vulnerable regions.
Despite his achievements, Kofi knows that the work is not over. Although the day is coming when Ghana will be able to declare zero cases of leprosy, the challenge of ensuring full acceptance of those who have been affected remains. “Our goal is for the next generation to grow up without stigma and for people to understand that leprosy can affect anyone, that it is curable, and that treatment is free,” Koffi emphasises. There is still a long way to go.
For Koffi, the fight against leprosy has been more than personal. It has been his life’s mission, a battle not only against a disease, but against prejudice and rejection. I ask him if he ever saw the geography teacher again, and if he was able to greet him by shaking his hand. He laughs, puts his hand on my shoulder and comes closer, as if to confide: “I never saw that teacher again. Although it would have been a nice way to close the circle. But it comforts me to think that, after all these years of work, perhaps he will no longer discriminate against a pupil because they have had leprosy”.