Dreams of a normal life.

Noma is a preventable and treatable disease that affects people living in poverty, especially young children, and is associated with malnutrition and unsanitary living conditions. Mostly it affects people in isolated communities who have limited access to healthcare and vaccinations.

The disease starts as an inflammation of the gums but spreads rapidly, destroying facial tissues and bones. If left untreated, up to 90 percent of people affected will die, usually within a short time. Those who survive are left with a severe facial disfigurement that can make it hard to eat, speak, see or breathe. Survivors often face stigma because of their disfigurement.

In February this year, MSF together with the MoH in Nigeria presented a request to the WHO to include noma in its list of NTDs. This was after a three-year international advocacy and communication campaign, where a representative from the Federal Ministry of Health of Nigeria shared the dossier on noma with WHO offices in Abuja, Brazzaville, and Geneva. MSF supported Nigeria in finalising the dossier and engaging with the co-sponsors, which include 30 countries from five WHO regions.

At the ongoing World Health Assembly week in Geneva, MSF and other partners organized a side event focusing on noma in support of this campaign. As part of this campaign, we are sharing with you an account of three noma survivors who now work at the Sokoto Noma Hospital; a first-person account of one of the survivors; and some photos that you could use for your pieces.

Three survivors of noma, a disease that should no longer exist

In many ways, Muhammadu, Mulikat, and Dahiru have little in common. They were born in different corners of Nigeria (Yobe state in the northeast, Lagos in the southwest, and Niger state, in the center) and grew up in different circumstances and with different dreams. But one day, when they were still children, their lives and those of their relatives changed forever because of noma.

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, incomfort and social stigma.

Today, noma survivors Muhammadu, Mulikat and Dahiru see each other every day at Sokoto Noma Hospital, which is supported by 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.

“My father took me to several places in search of a cure, including three months in a hospital in Maiduguri, in the northeast,” recalls 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 says. “In addition, I strive to educate others about noma: so they know, for example, that cleaning their mouths daily reduces the risk.”

Muhammadu is following the example of Mulikat, a powerful advocate in the fight against noma. Mulikat is also, without a doubt, the most elegant person in this hospital. Looking impeccable in her colourful dresses, Mulikat works with the health and mental health promotion teams. Telling her story helps people within local communities to recognise the disease early and helps children with noma and their families not to lose hope. “I understand their suffering well,” says 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 socialise. 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 recognised as a neglected tropical disease.”

Dahiru pushes a stretcher with a child who has just finished his first round of surgery. He remembers his first surgery very well, soon after he arrived at Sokoto noma hospital as a teenager from Niger state. Recovering in hospital, he met his first wife, Fatima, also a noma survivor, and decided to stay on and work at the hospital as a cleaner and warden. Unfortunately, Fatima died giving birth to twins, who also died. “It was very hard,” says Dahiru, “but I remarried and now I have two healthy children. I hope they can go to school soon."

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 are an inspiration to the people affected by noma and other survivors who arrive at Sokoto often feeling as hopeless as they once did.

Education is very important for all three. They see it as the key to making choices about the future, now that noma no longer holds them back.

Mulikat returned to education and succeeded in gaining a diploma in health information management in 2018. She is also a co-founder of Elysium, noma's first survivors' foundation, while she has travelled 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 says.

Muhammadu made a decision on arriving at the hospital. “I felt I had to learn to read so that one day I could become a medic,” he says. “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, cleaning 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. Although they work at different locations within the hospital, their meetings are filled with warmth as they smile and exchange pleasantries and news.

“I’m happy now,” says Dahiru. “When I see my life before, and now, I feel very happy. I can't believe that now I'm the one helping others.”

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 Sokoto noma hospital are provided free of charge.

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Noma: "There is ability in disability and there is nothing that we cannot do.”

Mulikat Okolanwon got noma as a child and was left severely disfigured. After several surgeries at Sokoto Noma Hospital in northern Nigeria, she started working in the hospital and went on to become a patient advocate, traveling abroad to raise awareness of the disease and sharing her story.

“I started my life in an awkward way, not like other children. I was living with my grandparents in their village when I was affected by an unknown disease. They tried what they could, but the disease got worse and rapidly destroyed my face.

I was referred to a teaching hospital near my home and I recovered from the disease. However, it left a deadly mark on my face that hindered me from associating with people in the community. After that I couldn’t go out, I couldn’t go anywhere. Imagine a life where people are running away from you. I couldn’t look at myself in a mirror nor snap pictures like the rest of the people. I lived in loneliness and depression all the time.

Later on, I had surgery in another hospital but, after multiple attempts, it failed. The outcome led to more panic and emotional instability for me and my family. I was crying all the time and I often wished I hadn’t survived to witness the stigma and social impact of the disease.

Luckily, I met a professor in Lagos who referred me to Sokoto Noma Hospital. It was a 24- hour drive away. There, I had my first successful plastic surgery. I had five more rounds of surgery over the next 20 years before getting to this present stage.

After that, I finally began to admire myself, take pictures of myself, and to interact with people in the community. I enrolled at school to catch up on life. But still, some students didn’t like to interact with me because of the way I looked.

My first job at Sokoto Noma Hospital was as a cook. Later I decided to further my education so that I could have a career. It was tough because I struggled to pay for the classes, but I held on. Today, I have a diploma in health information management.

In January 2018, I started working as a hygiene officer with MSF in Sokoto Noma Hospital, where noma patients are treated for free. I also work with the mental health department. Telling my story encourages noma patients and their families to keep on fighting and gives them hope. 

In 2022, my journey as noma advocate took me for the first time outside Nigeria. I was invited to Switzerland and got the opportunity to share my story during the World Health Assembly. The Minister of Health of Nigeria was also there and announced Nigeria was taking the lead in requesting the addition of noma to the World Health Organization’s list of neglected tropical diseases. Its inclusion is key to raising awareness globally and to getting the attention that noma deserves.

My motivation to speak out is because 90 percent of noma patients die within a few weeks – and that is something that we can prevent. It is important to repeat that noma is a preventable and treatable disease that should not exist anymore.

I also co-founded the first noma survivors’ organisation. Our objective is to support survivors just as we were supported, so they can get a job and an independent life. There is ability in disability and there is nothing that we cannot do.”

For any media requests, kindly reach out to:-

John Riaga, Media Manager -John.riaga@nairobi.msf.org

Mildred Wanyonyi, Press Officer- Mildred.wanyonyi@nairobi.msf.org

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