How do people with long term diseases survive survival?
Noma is a noncommunicable disease can start as just a pinch of pain inside a child's mouth yet, if left undiagnosed and untreated, it destroys flesh and bone, resulting in death or a lifetime of facial disfigurement.
As a child Fidel Strub couldn’t understand why he got noma and no one else. The impact on his family was huge, no-one was untouched. He saw his family struggle financially to get him diagnosed, to get treatment in Burkina Faso, before being flown from his home to Switzerland for treatment. He found himself as a young child, in a strange land, re-learning how to eat, how to speak, avoiding mirrors, undergoing endless medical procedures, and learning to live with depression, loneliness and anger.
“It is not just about surviving, it is about learning to live. If I was to tell my story, it would not stop. There was so much trauma I barely made it.”
Noma destroys each person's face in a specific way, so while there is a common base procedure, there can be completely new procedures needed for each survivor. Depending on the deterioration of the face, each one must be constructed in a different way. Some cannot breathe, some cannot chew, many have no access to the experts that can help them do so. Fidel felt that he could not even choose a trauma to describe the impact, it was so multifaceted. Even today, decades later, ordinary actions like going for a dental check up mean his dentist must know his case in depth.
Fidel Strub and Mulikat Okanlawon, co-founders of Elysium Noma Survivors Association
Photo credit: Claire Jeantet – Fabrice Caterini / Inediz
That specialization is part of the problem. Noma advocates, like Fidel, have worked hard to use meetings and events to connect academics, policy-makers, surgeons and other experts. Universities, doctors, dentists, and surgeons, all work on their own aspect of noma’s impact. A noma database to gather information and make that information accessible is one of the things he most wants to see.
The true magnitude of noma’s impact, even the number of people who had or survived noma, is unknown. It is described as “one of the world’s most under-recognized health challenges” by WHO Director-General Dr Tedros Adhanom Ghebreyesus. Noma was added to WHO's official list of neglected tropical diseases in December 2023.
Simply figuring out how many people have had noma is challenging. It is a rapid disease that kills quickly, and it strikes in areas of poverty where there may not be good health infrastructure. Affected children can be misdiagnosed, and those who die may never be diagnosed at all. The disease has a social stigma, as it primarily affects malnourished young children in regions of extreme poverty. Even after survival, the trauma is so severe that many do not survive survival. Fidel himself attempted suicide twice. His experience is that after the medical issues were solved, there was little understanding of the survival of its impact. Again, there is little data on how many survive the decades after medical recovery.
“Noma is more than a disease, it is a social marker of extreme poverty and malnutrition, affecting the most vulnerable populations.”
The last figures issued by WHO are from 1998. Then there were an estimated 140 000 new cases per year, with a prevalence of 770 000, and a case fatality of 90%. There may be even good news concealed within the data: recent evidence suggests that the reported noma case fatality rate could now be less than 90%, and it is known that noma can be greatly reduced with early treatment.
The struggle to survive noma can be constant and lonely. Fidel and other survivors have advocated for the recognition and elimination of noma for decades. He has worked on awareness building and fundraising, help to connect experts, and spoke with Bente Mikkelsen, WHO Director of Noncommunicable Diseases, at a side event of the World Health Assembly.
Fidel Strub co-founder of Elysium Noma Survivors Association and Bente Mikkelsen, Director NCD Department, May 2023
Photo credit: WHO / Anne Kennedy
It was an online noma conference in February 2021 that Fidel Strub felt the tide change. The event was dedicated to the discussion of noma. It felt to Fidel like a recognition. He and Mulikat Okanlawon, a noma survivor from Nigeria, co-founded the Elysium Noma Survivors Association after meeting at the World Health Assembly in 2022. Then the Government of Nigeria spearheaded action to have noma included in the WHO list of neglected tropical diseases.
“…now the fight can begin by combining the point of view of survivors with data while networking experts, humanitarian organisations, medical practitioners and researchers.”
The inclusion of noma to the list of neglected tropic diseases was recommended by the Strategic and Technical Advisory Group for Neglected Tropical Diseases in 2023 and fulfils the mandate on noma outlined by the resolution on oral health which was adopted in 2021 at the World Health Assembly. This classification will amplify global awareness, catalyse research, stimulate funding, and boost efforts to control the disease through multisectoral and multi-pronged approaches.
The broader picture on noma is immense. We are missing data, we are missing chances to network experts and survivors, we are missing even the numbers impacted. But we are also missing preventions, cures and opportunities we have not yet identified.
With survivors in the lead, the race is on to know, to understand, and to end noma.
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Fidel Strub has been advocating on noma since 2017. He co-founded, with Mulikat Okanlawon, Elysium Noma Survivors Association, in 2022. Born in May 1991 in Ouagadougou, Burkina Faso, in 1994, he became sick with Noma. Following his recovery, he had 27 operations and many years of re-learning how to eat and speak. The mental toll of the illness was also extensive.