Interview With Valter Muendane: “I Am a Winner. I Survived Noma, a Disease that Usually Kills People Very Quickly”

Noma is a rapidly progressing gangrenous disease that causes severe facial disfiguration. It kills more than 90% of those affected, most of whom are children living in extreme poverty.

Noma is the “most forgotten of the forgotten diseases” according to Marta Ribes, a doctoral researcher at ISGlobal, who is studying the disease in Mozambique with Carlos Chaccour. Until December 2023, it was not even included on the World Health Organization’s list of neglected tropical diseases and the exact cause of noma is still poorly understood, although it is thought that it could be due to an imbalance in the normal oral flora. By contrast, the risk factors that favour the disease are well known: extreme poverty, malnutrition, poor oral hygiene and a weakened immune system. Since all of these factors are preventable and noma can be treated in the early stages with antibiotics, it is all the more heartrending to know that noma kills 90% of those affected, most of whom are children. And those who do survive have to deal with severe facial disfiguration and lifelong physical and psychological scarring.

Valter Muendane from Mozambique, now a 23-year-old man, was one of those childhood survivors—someone who was fortunate enough to survive but also stigmatised. If someone had told him then, when he did not want to venture outside his home in Maputo, that one day he would have facial reconstruction surgery, study nursing, get married, have a child and travel to Basel to speak at a symposium on noma, he would not have believed it possible.

We met Valter when he passed through Barcelona on his journey home from the symposium together with the Nigerian Mulikat Okanlawon, founder and president of the first association of Noma survivors (Elysium). Throughout their whole journey they were accompanied by Marta Ribes and by a small film crew led by Fabrice Catérini and Claire Jeantet, who made the documentary on noma entitled "Restoring dignity" and are now shooting a second film about the lifelong repercussions of the disease on survivors.

1. Valter Muendane holding a photo of himself as a child, shortly after experiencing the acute phase of noma. 2. Valter proudly poses, showing his Nursing degree. 3. A healthcare professional in Zambezia (Mozambique) standing next to an informational poster about noma. Photos by Marta Ribes.

- What is noma?

- Noma is a disease that starts as a simple gum lesion but develops into a necrotizing gingivitis, a gangrenous process that destroys the soft tissue, skin and bones of the face.

- Can you tell us about your own experience?

- It all started with a slight headache and a pain in my face. I was nine or ten years old. My mother took me to a small hospital in Maputo and they gave me some medication. The next day, back at home, the condition got worse. My face started to swell and at one point I had trouble breathing. Parts of my face— the area around my nose and between my lip and nose—had turned black. My mother took me to a bigger hospital, where they removed the gangrenous tissue.

- Did they know at the time that what you had was noma?

- No. They saw I was undernourished and started treating me for malnutrition. I was able to return home although I had to go for treatment every day to a small hospital near my home. I had a hole in my nose and another between my nose and lip. They were so big that the inside of my mouth was visible.

Years of isolation

- Was the disease still active?

- No, but the wounds had to be treated daily. They had to be washed every day and covered with gauze. They gave my mother the materials and showed her how to do it. I had to wear dressings for three or four years.

- The disease changed your life.

- Yes. Before noma I was a little boy who ran about and played football with the other children. After noma I didn’t even want to leave the house. My family encouraged me to go out but I couldn’t do it. When I did venture out the other children stared at me and made fun of me. For a while I went back to school, but I didn't socialise with the other children and, as soon as the school day was over, I went straight home and stayed there. The disease changed me completely.

The new face in the mirror is you

- Did plastic surgery restore you to yourself and give you hope?

- Yes. That happened four years later. The doctors at the hospital said they could not reconstruct my nose in Mozambique. Then an association launched a campaign to raise the funds needed to cover the cost of an operation abroad. An Englishwoman paid for me to travel to Portugal, where I was examined. They told me that I would have to wait two years for surgery. When I returned to Mozambique, the same association contacted a group of plastic and maxillofacial surgeons working in Ethiopia. After studying my case, they said that they could operate immediately and that there was no need to wait. The association raised the funds and I travelled to Ethiopia.

- What was it like to see yourself in the mirror after the first operation?

- It was a bit difficult because the face I saw in the mirror was another Valter. My face had changed. But the result was improved by the second operation and I also started to get used to my new face and realised that I looked better than before. From then on I started to go out, to talk to people and to dream again! I started to dream about becoming a nurse. I wanted to give back what I had received. And I saw myself as someone who could do anything: dream and make my dreams a reality. I dreamed of becoming a nurse. I studied. And I made the dream come true. I also got married and now I have a wife and a three-month-old son. The surgery changed my life.

Today, I am a winner

- What is your dream today?

- My main goal now is to get a job as a nurse, anywhere—in Africa or in Europe—to help other people and to help my son. I don't want him to be malnourished and for the same thing to happen to him as happened to me. I want to have a job so that I can feed him well and give him a better life than I had. In Mozambique, I met Marta Ribes from ISGlobal, who told me about Elysium and I joined the association. Elysium’s goals are aligned with what I feel is also my goal in life: to help people who have survived noma.

- How do you help them? What do you say to them?

- I tell them my story. I explain how I managed to overcome the difficulties by looking at myself and telling myself that I had to accept where I was and not lose sight of my dreams. Because the only difference between you and me is that I am a noma survivor. Otherwise we are essentially the same. I can keep on living, dreaming, helping other people and other survivors. Life goes on. I am a winner. I survived noma, a disease that usually kills people very quickly. As I've made it this far, I can continue to fight and to dream.

Put yourself in my place: be in my place!

- Do you remember how you felt when you first met another noma survivor?

- Yes, it gave me courage to see that there was someone else who could understand how I felt. She didn’t have to put herself in my place because she was already there!

- What has been the hardest thing about having noma?

- Perhaps the days when it happened. The destruction, the gangrene. But also the consequences. In the aftermath, my head was spinning. All my dreams had been snuffed out. I did not know then that surgery was a possibility. I looked at my face without a nose and I couldn’t imagine how I could continue to have any dreams. I felt that there was no way out.

- At what point did you know that what you had was something called noma?

- In Portugal. After the doctors examined me, they told me that the disease that had destroyed part of my face was called noma. But I was still young and I wasn't very curious about it. As I got older, I started digging a little deeper.

- There is still a lot of research that needs to be done; noma is a very little known and poorly understood disease. Why is it so necessary that survivors should participate in this work?

- Because only we can tell the story of what we went through and what others are going through. Someone who survives noma goes through many stages, starting the moment the disease develops right through to their recovery from surgeries and it doesn’t stop there. The consequences of noma are hard to deal with because no one is born with the disease. For example, I am a nurse now and I have knowledge, but in certain job interviews the people who see me think that I will not be able to do my job. I would like to be seen as a normal person, someone with the same capabilities as anyone else.

For more information on noma:

Elysium. Noma Survivors' Association

Noma Echoes