Kofi Nyarko, the activist who went more than a decade without a leprosy diagnosis and fought to welcome survivors into their homes.

Kofi Nyarko (54, Nyankomasi, Ghana) was seven years old when his family discovered spots on his face. They didn't give them much thought. Over time, these lesions spread to other parts of his body. Neither he nor anyone around him knew it yet, but these marks were one of the first symptoms of leprosy , a disease that lasts between three and five years and had been developing silently inside his body for some time. It wasn't until years later, when Nyarko was 13 and already suffering from physical after-effects, that a street vendor passing through his village saw him, recognized the deformities in his hands and feet, and took him to the Ankaful General Leprosy Hospital, a center specializing in the disease.

“That day was the first time I saw someone without fingers, with both legs amputated. I was completely shocked,” he recalls now, more than 40 years later, in an interview with EL PAÍS in Bilbao, where he traveled to attend the 2025 Anesvad Foundation Awards , presented last week. Today, Nyarko is the president of IDEA Ghana (a network of people affected by leprosy), director of a school for children with special needs, and a renowned activist in Ghana against the stigma and ignorance that still surrounds this disease, included on the World Health Organization's (WHO) list of Neglected Tropical Diseases (NTDs), which officially registered 107,000 new cases in 2023.

After the diagnosis, Nyarko moved to a missionary-run childcare center, where he received antibiotic treatment. He also underwent several surgeries to correct the foot deformities caused by leprosy and had to learn to walk again. Today, as an activist, he emphasizes the importance of early diagnosis . “If you're diagnosed early, you're cured without any disabilities. And if not, you're cured anyway, but the disabilities can't be reversed,” he explains.

Leprosy has been curable for 40 years , with free treatment that can prevent its consequences if started early. Furthermore, once the patient begins treatment, they are no longer contagious. Also known as Hansen's disease, named after its discoverer, it is transmitted through microscopic droplets expelled from the nose and mouth. However, it takes prolonged exposure to a patient in unhygienic environments, with poor nutrition and overcrowding, to become infected.

Once recovered, Nyarko continued his studies and began visiting the segregated camps where people with leprosy and survivors lived. “Many people thought that when you had leprosy, all you could do was go out on the streets begging. When I heard those stories from some of the elders in the colonies, I told myself I had to change that perception,” he recalls.

Little by little, and using himself as an example that “leprosy isn't the end of your life, and that you can continue with it after treatment,” Nyarko began to raise awareness about this disease, which is still shrouded in ignorance today. “I realized that, especially in Africa, many people believe that leprosy is when someone has lost fingers, toes, or things like that—something completely incorrect. You can see someone without fingers, but who has been cured for many years. Other people think there's no cure. And some believe it's not caused by bacteria, but by an evil spirit,” he laments.

Across the continent, in many places, strategies focus on cities. But most of the problems aren't there, but in rural areas.

Kofi Nyarko, activist against the stigma of leprosy

During his visits to leprosy communities, Nyarko collected, over the years, the names and places of origin of their inhabitants. He soon realized that many had been living in isolation for decades , marked by stigma and neglect. The activist was particularly struck by the testimony of a woman who lived in one of these camps. “She told me, ‘Kofi, the saddest thing of all is that when someone dies here, we are all devastated.’ There is a large cemetery. We prepare the coffin ourselves, place the person inside, pray for them… and then bury them,” the activist recalls. “The deceased were not allowed to be sent back to their villages. They had to be buried in the colony,” Nyarko explains.

Once Nyarko established a bond of trust with the settlement's residents, she asked them a key question: after so many years, if you had the chance, would you return home? "Why not, Kofi? But maybe if I return, I'll face discrimination," she recalls their response. "Then I told them they wouldn't return first, that I would go to the community first and begin educating them." Nyarko would take her bicycle and sometimes pedal for three hours to reach the leprosy survivors' communities of origin. There, she would speak with the residents, with the village chief. She would inquire about whether they still had relatives. She would tell them that one of their own had been living for a long time in one of those segregated camps. She would speak to them about the possibility of his return, about the need to welcome him back. Since then, thanks to this awareness-raising and educational work, more than 860 people have been able to reintegrate into their communities of origin or settle in nearby villages.

We have reached a point where, thanks to awareness-raising efforts, people are paying attention to the symptoms.

Kofi Nyarko, activist against the stigma of leprosy

Another task carried out by the activist and IDEA Ghana, the organization he chairs, is raising awareness about this disease, both in schools and churches, as well as in rural communities. “Across the continent, in many places, strategies focus on cities. But most of the problems aren't there, but in rural areas. Sometimes cars can't get there, or you have to walk five or six kilometers. But these are the areas where we need to work,” he explains. “We go there, do awareness activities, and also perform skin exams. If we find people suspected of having Buruli ulcer , elephantiasis , or leprosy, we refer them to health professionals,” he explains. He also mentions a project to create posters with images for visual diagnosis, which are placed in pharmacies, clinics, bus stops, or in villages. “Sometimes someone sees the image, compares their own spot, and says: 'That's not it, but someone in my community does have something like that.' And then they call us, and we refer that person to the nearest hospital.”

For Nyarko, the situation regarding leprosy has changed a lot since he was a child. However, even today in Ghana, around 230 cases of the disease are diagnosed annually , according to official WHO records from 2023. When asked if he believes it is possible to achieve zero leprosy in his country by 2030 (eradication of this disease is one of the goals included in the Sustainable Development Goals ), the activist is hopeful. “Especially in Ghana, with the way we are working, if we continue like this, we can achieve that goal. We have reached a point where, thanks to awareness-raising efforts, people are paying attention to the symptoms,” he says. However, the activist fears that recent funding cuts from major donors will affect the fight against this and other NTDs : “[Organizations] have unfinished business. If funding stops… it will be a very serious problem globally. Many people are still suffering from Buruli ulcer , elephantiasis, or other diseases. Where will they get the medicines? Where will the funds come from to continue raising awareness? People will start dying. We have to think twice. Otherwise, it will be a disaster.”