A Leprosy Centre is Restoring Dignity to Nigeria’s ‘Forgotten’

Yusuf Lisam’s symptoms began subtly. First came the tingling in his fingers, then the rashes that refused to fade. He had just returned from bee farming one afternoon when he noticed reddish patches spreading across his arms. At first, he dismissed it as an allergic reaction. But what started as an ordinary rash soon morphed into a decade-long struggle with leprosy that cost him his friends, his dignity, and nearly his livelihood.

“I thought it was nothing serious,” Yusuf recalls, holding the shoe he was assembling together in his modest work station in Mangu, Plateau State. His eyes fade into the distance.

 “The wounds on my hands made people afraid to come near me. Some thought I was under a curse.”

The next five years of Yusuf’s life were filled with endless visits to traditional healers and religious houses, all promising cures but delivering none. Even his hospital visits resulted in a misdiagnosis.

“I went to the hospital and was given some drugs. None of them seemed to be working. I suffered for so long.”

Leprosy, also known as Hansen’s disease, is caused by a slow-growing bacterium that attacks the skin and nerves. Although curable with multidrug therapy, delayed diagnosis can lead to nerve damage and disability. According to the World Health Organization, Nigeria remains one of the countries with the highest leprosy burden in Africa, recording thousands of new cases every year.

Per the National Centre for Disease Control and Prevention, “in Nigeria, leprosy remains a disease of public health importance with over 3500 people diagnosed with leprosy every year and about 25% of patients having some degree of disability. Stigma and discrimination against persons and communities affected by leprosy in Nigeria is very high, due to myths and superstitions associated with fear of the disease.”

Nigeria has 64 designated leprosy settlements. While these provide shelter and treatment, “they also pose the risk of further isolating patients and encouraging stigma” thus defeating the original aim. Today, many survivors of leprosy are still excluded from education, jobs, and even family life.

For Yusuf, the turning point came when members of his friends directed him to the Medical Center in Akwanga, one of the few facilities in Nigeria with a dedicated leprosy unit. From there, his treatment proceeded to the Church of Christ in Nations (COCIN) Hospital and Rehabilitation Centre, Mangu, Plateau State. 

Originally known as the Mangu Leprosy Settlement exclusively for leprosy patients, the facility has since evolved. In 2000, during its 50th anniversary, it was renamed COCIN Hospital and Rehabilitation Centre, Mangu, to reduce stigma. 

“Because of the name ‘Leprosy,’ people used to avoid the facility,” explained Chawat Simon, head of the leprosy clinic. “They would ask, ‘Why should I go there when I don’t have leprosy?’ Even if someone came for a different reason, people would assume they had leprosy and stigmatise them. Changing the name made the hospital more inclusive, so patients are no longer defined by their condition.”

“Today, the hospital operates as an integrated health center. Patients with leprosy are treated alongside others, reducing the stigma of being seen entering a ‘leprosy hospital,’” he added. 

The place no longer exists solely as a settlement. “We don’t bring patients to live here anymore because it will encourage stigma. But those that are treated, rehabilitated, we settle them back in their places of abode. They only come here [for follow-up care].”

“Everything about leprosy is free, from diagnosis, drugs, and treatment. From the first day of detection to the last dose of medicine, patients pay nothing,” explained Chawat.

“Treatment happens in phases. First, we cure the disease with multidrug therapy. Then physiotherapy helps stiff fingers and legs regain function. Only after that do we assess which skills a patient can learn to help them make a living,” he said.

To help patients properly integrate into the society, the hospital runs a vocational rehabilitation programme that empowers patients with skills in shoemaking, tailoring, carpentry, and welding. Till date, more than 3,658 patients have been treated and scores of former patients have benefited from the vocational rehabilitation programme. The hospital now offers general surgeries, eye care, and physiotherapy. 

It was through this program that Yusuf trained as a shoemaker. The hospital provided him with relevant tools to start up, empowering him to take charge of his life once more. 

“It bolstered my confidence as a man,” Yusuf said, holding up a footwear he was making. “Now, I have a source of livelihood to take care of my family and don’t have to depend on others for survival.”

Today, he lives with his wife, who has stood by him—and their six children. Despite challenges such as insecurity in Plateau State, Yusuf continues to provide for his household through his craft.

But Yusuf’s journey is not unique. Across the settlement, Musa*, another survivor, shares his story. Once a proud farmer with two wives and four children,  leprosy gradually stripped him of his livelihood and family. “I used to be a hardworking farmer. But when this issue started, I couldn’t do anything on the farm anymore. Even my wives began to avoid me and eventually, they left me,” he said. 

As the leprosy progressed, he gradually lost use of his left leg until it was finally amputated. 

What is left of the settlement mostly serves the elderly who may find it difficult to reintegrate into society. Now living full-time at the settlement, Musa actively took up animal husbandry. However, unlike Yusuf, his disability prevents him from fully taking advantage of the vocational programs, an evident limit of rehabilitation for those who end up being diagnosed too late.

Martha’s* story is similar to Musa’s. When her symptoms first began to appear, her husband divorced her. “The people around me treated me as though I was less than human,” she said. From her hometown in Taraba state, she made her way to Mangu upon the recommendation of her uncle. 

“I felt welcome here. No one was looking at me with a judgemental eye,” she said. 

After months of treatment, she indicated interest in returning to farming, the only job she has known her whole life. It was during her time at the facility that she met Musa. Together, they found solace in each other and now, in their 60s, they have made the settlement their home, finding comfort in staying close to others who are equally braving the condition.

Yusuf’s story recalls Rebecca, another survivor of the disease. After completing treatment at the facility, she was trained in tailoring and given a sewing machine. “She went back home and started her business and is doing well now,” Yusuf recalls.

Despite these gains, there still exist challenges. While the WHO covers the cost of treatment, secondary complications such as stroke, or high blood pressure are not covered. Many patients cannot afford these costs and the hospital relies heavily on financial support from church partners as well as internally generated revenue.

The vocational training program equally lacks investment and only a handful of patients are trained each year due to lack of funding and dilapidated facilities. The existing facilities are equally begging for a reform. 

The hospital is also grappling with insecurity. Attacks on the facility in recent years have discouraged patients from traveling there for treatment. 

“This facility has been attacked at least twice. Our only saving grace was that some members of the community helped us repel the attacks. There was a time this place was full of people,” a staff member explained, “but now, with the threats, everyone is scared.” This has reduced the reach of COCIN.

But Chawat is confident they’d soon find a lasting solution as they move from exclusion to empowerment.

*Names marked with asterisks were changed to protect the identity of sources.

This story was made possible by Nigeria Health Watch with support from the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems.