... No Singular Cause Identified for the Gangrenous and Face Disfiguring Disease
… Nigeria Needs Technicalities, Funding to Fight Disease
… National Noma Day, Conference, Nov 19 – 20
Medicin Sans Frontiers (MSF) experts, Dr. Adolphe Fotso, and Philip Aruna said about 2.17 per cent, that is 11 of 281 diagnosed Noma patients identified within its specific research area, Sokoto state, died.
The experts made the confirmation at the screening of ‘Restoring Dignity’ a documentary production by Inediz media, aimed at increasing awareness about the non-communicable disease.
The 11 casualties form part of the 281 patients who had more than one surgery each totaling up to about 506 surgeries, MSF conducted between August 2015 to September 2018.
The deaths, Dr. Fotso said include those who died of other causes during MSF’s six to 12 months after surgery follow-up, a standard empirical methodology applied by other Noma research scientists.
Noma, an orofacial gangrenous disease has been found across the African continent and other parts of the world, is prevalent among children but also seen amongst adults. Noma has a high mortality rate especially if parents are without medical intervention, and survivors are left with severe disability and disfigurement.
“There is no known cause of Noma, although a bacterium, fieso bacterium necropherium, is associated with the disease” Dr. Fotso explained.
“A number of factors increase risk of Noma; they include malnutrition, poor hygiene, which is why we stress healthy hygiene and inadequate breast-feeding of child we find also increase risk of Noma, and non-completion immunization treatment.
‘To tackle Noma, you need a holistic approach that addresses all the situation involved,” emphasized Dr. Fotso.
Since MSF Noma project took off in 2014 at the Noma Children Hospital in Sokoto State, the organization has received patients from Niger, Delta and some Northern States. Bridging the gap left by the exit of the Dutch Noma Foundation which created a backlog of patients requiring surgery, MSF organizes four specialized surgical interventions per year; and is presently on its 13th edition.
Living with Noma
Mulikat Okonlanwo lived with Noma for over twenty years of her life. From the very age of about 8 to 12 years, her gangrenous, disfigured face repelled people, for all of her childhood to adult age.
Her Noma experience started with high fever, followed by face swelling, and the eventual loss of a part of her facial bone structure. The family moved her from hospital to another until 1997 when she arrived at the Noma hospital, then operated by the Dutch Noma Foundation.
“People didn’t want to associate to me. I didn’t like to go out in public, I ran away when I saw people, because I don’t want them to say hurtful things to me,” sniffled Okonlanwo.
“I only go out in the evenings often with my face covered, yet people ran away from me. I had no friends, and I stopped going to school.”
As one of the first patients at the Noma hospital in 1997, before its official opening two years later in September 1999. She underwent surgeries between 1997 and 1998, and the final surgery to reconstruct her nose in 2011. Since then, Mulikat has returned to school, graduated and is a hygiene worker at a hospital in Sokoto.
Life After Noma
Before the operation Mulikat neither considered herself human nor one with any capability. Today Mulikat spends most of her time at work or advocating against Noma. One of the ways she does so is through the education of people who ask about her appearance.
“I answer questions when people ask what happened to my face. I tell them in case they have someone like me, and I also tell them where to take them to,” smiled Mulikat.
Working with Inediz, a French multimedia agency, MSF is creating awareness of Noma across the globe; and with the Inediz and the Ministry of Health to raise awareness of Noma in Nigeria.
In collaboration with the ministry, a national day of Noma is scheduled to hold on the 19th and 20th of November, at the Shehu Musa Yar’adua Center, and the NICON Luxury Hotel, respectively, to address the disease, issues around it and more capacity to fight it.
Urging more Nigerians to attend the event, MSF Head of Mission in Nigeria, Philip Aruna, said the goal of the conference is “have a mapping of who and who is doing what about Noma in Nigeria, and also create awareness of preventive measures.”
So far, the Noma Hospital in Sokoto is the only one specially established to treat the disease in West Africa, however, it is not the only one treating Noma patients.
“Ahmadu Bello Teaching Hospital ABU, Teaching Hospital, is doing so, and we are looking at bringing on more capacity to help address the disease. The difficulty is in technicalities. Nigeria has the capacity to treat Noma, but need the financial and technical aid,” stressed Aruna.
Dr. Fotso said the advocacy is to enlighten people to take preventive action upon detection of gingivitis – the gum bleeding, during teeth brushing, which is the early stage disease to go to the hospital. Onset is rapid and damage can occur in as less as two to three days.
Fotso said the disease is reversible from the early stages of Gingivitis, and Oedema, symptomized by spontaneous bleeding gum, onset of painful ulceration of the gums, fetid breath and excessive salivation. However, from stages 3 to 5, the Gangrenous, Scarring and Sequalae stages, the disease is irreversible, facial disfiguring, requiring complex surgeries.
Dr. Fotso said four researches are ongoing to determine risk factor; identify the role of caretakers and traditional healers in Noma treatment, as well as the outlining potential to work with them to increase community engagement. The other researches will identify outcomes in order to improve quality care of Noma patients in north west Nigeria, and a prevalence study, to estimate its frequency in all age groups in north-west Nigeria.
“We are collecting data and by 2019 we will be able to give more information on the disease,” Fotso concluded.