Nigeria: Three survivors of noma share their experiences with a preventable but neglected disease

In many ways, Muhammadu, Mulikat, and Dahiru have little in common. They were born in different corners of Nigeria and grew up in different circumstances and with different dreams. But one day, when they were still children, their lives changed forever because of noma, a neglected tropical disease.

Noma is a completely preventable disease, easy to treat if addressed in time. Untreated, it eats away the skin and bones of the face in just a few weeks, leading to death for up to 90 percent of people infected, most of whom are children. The 10 percent who survive are left with a future of pain, discomfort, and social stigma.

Surviving noma with MSF’s support

Today, noma survivors Muhammadu, Mulikat, and Dahiru see each other every day at Sokoto Noma Hospital, which is supported by Doctors Without Borders/Médecins Sans Frontières (MSF). All three arrived after long journeys seeking help for their condition. After receiving treatment and several rounds of surgery each, they regained confidence and hope for the future. All three decided to stay at the hospital and become part of the solution.

Mohammadu Usman, a 22-year-old noma survivor, works as a cleaner and is studying to become a doctor. Nigeria 2023 © Fabrice Caterini/Inediz

"My father took me to several places in search of a cure, including three months in a hospital in Maiduguri, in the northeast,” recalled Muhammadu, now a secondary school student at a local school and a cleaner at Sokoto Noma Hospital.

“Someone told us about a hospital in Sokoto, but it was very far from our town. My father had to sell some animals to pay for the transport."

When Muhammadu arrived in Sokoto, he could barely open his mouth, making eating and talking almost impossible. After two rounds of surgery, his condition and his outlook have improved immeasurably. “I can go anywhere now, and I don't feel ashamed,” he said. “In addition, I strive to educate others about noma, so they know, for example, that practicing good oral hygiene daily reduces the risk.”

Calling global attention to noma, "the most neglected of neglected diseases"

Muhammadu is following the example of Mulikat, a powerful advocate in the fight against noma. Mulikat works with the health and mental health promotion teams. Telling her story helps people within local communities to recognize the disease early and helps children with noma and their families not to lose hope.

“I understand their suffering well,” said Mulikat. " I was crying all the time and I often wished I hadn’t survived to witness the stigma and social impact of the disease. For a long time, I did not want to socialize. Luckily, they brought me here. In 20 years, I’ve undergone five rounds of surgery. Now I am fine, and I am fighting for noma to be officially recognized as a neglected tropical disease.”

Noma survivors: closer to getting the attention they deserve

Dahiru remembers his first surgery very well, soon after he arrived at Sokoto Noma Hospital as a teenager from Niger state. While recovering at the hospital, he met his first wife, Fatima, who is also a noma survivor, and decided to stay on and work at the hospital as a cleaner and warden. Fatima later died giving birth to twins, who also died. “It was very hard,” said Dahiru, “but I remarried and now I have two healthy children. I hope they can go to school soon."

Dreams of a normal life

The hospital has become a place of hope for Muhammadu, Dahiru, and Mulikat. Not only have they had their dignity restored through the long process of recovering from noma, they have also found the means to live the dreams that had been once snatched from them by the disease: dreams of a normal life, an education, a job, a family.

As they perform their daily duties in and around the hospital, they offer hope to people affected by noma and other survivors who arrive at Sokoto often feeling as discouraged as they once did.

Education is a key priority for each of these survivors. They see it as the key to making choices about the future, now that noma no longer holds them back.

Mulikat went back to school and earned a diploma in health information management in 2018. She is also a co-founder of Elysium, noma's first survivors' foundation, and she has traveled abroad to share her story and raise awareness of the disease. "In 2022 I left Nigeria for the first time, to travel abroad to talk to those who take decisions and ask them to give noma the attention it deserves," she said.

Muhammadu made a decision when he arrived at the hospital. “I felt I had to learn to read so that one day I could become a medic,” he said. “The doctors supported me to stay in Sokoto and go to a boarding school here, and my father accepted. During the holidays I stayed in the hospital, washing cars to get some money. And then I got a job as a cleaner here. My plan is still to become a doctor.”

Muhammadu and Dahiru are now friends, though they work in different parts of the hospital. Their meetings are filled with warmth as they smile and exchange pleasantries and news.

“[think of] my life before, and now, I feel very happy. I can't believe that now I'm the one helping others.”

Noma makes WHO’s list of neglected tropical diseases

Today, noma is closer than ever to official inclusion on the World Health Organization’s list of neglected tropical diseases, which should bring more attention and more resources for tackling it. This year will hopefully be a turning point in the lives of Muhammadu, Mulikat, Dahiru, and all the other people suffering from or living with the consequences of noma. 

MSF has supported the Nigerian Ministry of Health’s Sokoto Noma Hospital since 2014, providing reconstructive surgery, nutritional support, mental health support, and outreach activities. Since 2014, MSF’s surgical teams have carried out 1,152 surgeries on 801 patients. All services at the hospital are provided free of charge.

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