Noma: Three survivors of a disease that shouldn’t exist

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 with different dreams. 

But one day, when they were still children, their lives and those of their relatives changed forever.

They changed because of noma. 

Noma: Explained

Noma is a completely preventable infection that starts in the mouth and is easy to treat if addressed in time. However, untreated, it eats away the skin and bones of the face in just a few weeks.

Up to 90 percent of those who go without treatment die within two weeks. The remaining 10 percent survive with severe disfigurements and a life of pain and social stigma.

Sadly, noma mostly affects children under 10, often from poor and remote communities in parts of Africa.

Survivors Muhammadu, Mulikat and Dahiru see each other every day at Sokoto Noma Hospital, which is supported by MSF. 

All three came to Sokoto after long journeys seeking help for their condition. And, after receiving treatment and several rounds of surgery each, they regained confidence and hope for the future. 

Today, all three work at the hospital after deciding to stay 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,” says Muhammadu who is now a secondary school student as well as a cleaner at the 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. However, 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.”

An advocate

Muhammadu is following the example of Mulikat, a survivor and powerful advocate in the fight against noma. 

Mulikat is also, without a doubt, the most elegant person in the hospital. Looking impeccable in her colourful dresses, she works with health and mental health education teams to share her story with local communities. She helps them to diagnose the early signs of noma and shows the families of children with noma that they mustn’t 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.”

Resilience

Dahiru pushes a stretcher, transporting a child who has just finished his first round of surgery. 

He remembers his own first surgery very well, soon after he arrived at Sokoto 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. Tragically, Fatima died giving birth to their twins, who also died. 

“It was very hard,” says Dahiru.

“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, but they have also found the means to live the dreams that had once been taken from them by the disease. Dreams of an education, a job, a family. 

As they perform their daily duties in and around the hospital, they also serve as an inspiration to the survivors who arrive at Sokoto often feeling as hopeless as they once did.

Looking to the future

Education is also 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, a foundation for noma survivors, and 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 his own decision upon arriving at the hospital:

“I felt I had to learn to read so that one day I could become a medic.”

“The doctors supported me to stay in Sokoto and go to a boarding school here, which my father accepted. During the holidays I first stayed in the hospital, cleaning cars to get some money. 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.