First-person: Nigeria

Mulikat Okolanwon had noma as a child and was left severely disfigured. After undergoing several reconstructive surgeries at Sokoto noma hospital in northern Nigeria, which Doctor Without Borders/Médecins Sans Frontières (MSF) supports, she studied to become a healthcare professional. Today, Mulikat provides hygiene and mental health support to noma patients at the same hospital and has become a patient advocate, travelling abroad to raise awareness about the disease and share her story. She is the co-founder of Elysium, the first association for noma survivors. In 2024, she was named in Time Magazine’s 100 Most Influential People in Health.

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

I was referred to a teaching hospital near my home and I recovered from the disease. However, it left a severe mark on my face that hindered me from associating with people in the community. 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 or have my pictures taken like others. I lived in loneliness and depression all the time.

Later, I had surgery in another hospital but, despite multiple attempts, it failed. The outcome led to more panic and emotional instability for my family and me. 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.

After that, I finally began to admire myself, to take pictures of myself and to interact with people in the community. I enrolled at school to catch up in 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 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 the same hospital, where MSF treats noma patients 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 a noma advocate took me outside Nigeria for the first time. I was invited to Switzerland and had the opportunity to share my story during the World Health Assembly. The Minister of Health for Nigeria was also there and announced Nigeria was taking the lead in calling to add noma to the World Health Organization’s (WHO’s) list of neglected tropical diseases.* Its inclusion is key to raising awareness about noma globally and getting the attention and resources noma patients and survivors deserve.

“Telling my story encourages noma patients and their families to keep on fighting and gives them hope.”

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

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

*In December 2023, the WHO officially added noma to its list of neglected tropical diseases.