Always touted as an affliction of the extremely poor people, Noma disease is a silent killer in the country. Lack of reliable data on prevalence and poor case detection are some of the factors exacerbating this treatable disease which has continued to kill people, reports MOSES EMORINKEN
It all started as a small growth on her cheek, but it gradually increased in size until it covered a large part of her face, eating up virtually her infantile and beautiful face. Now as a teenager, every time she looks in the mirror, it breaks her heart that the image she beholds is totally different from the beauty that lies in her heart.
Scourged by the heavy stigma and discrimination she faces daily in her efforts to mingle and interact with the public, especially her age group, Hauwa found solace only in the enclosure of her parents’ mud house. As early as age five, she already knew she wasn’t accepted by her community. She would use a dark silky veil to cover her ‘monstrous-looking’ face to avoid being embarrassed, laughed at, or worse, avoided like a plague.
The medical term given to Hauwa’s peculiar condition is noma, an infectious yet non-contagious disease which rapidly eats away at the hard and soft tissues as well as the bones of the face, and results in the creation of a bizarre orofacial disfigurement.
Often described as ‘the face of poverty’, noma is a disease that progresses very rapidly. Without rapid treatment, in a few days, the patient’s condition becomes life-threatening. According to the World Health Organisation (WHO), in the absence of any form of treatment, noma leads to death in 90 per cent of cases, and mostly affects young children between the ages of 2 and 6 years suffering from malnutrition, extreme poverty and weakened immune systems.
Survivors that make up the remaining 10 per cent suffer from severe facial disfigurement, have difficulty speaking and eating, and face social stigma. If noma is detected early, its spread and progression can quickly be stopped, either through basic hygiene rules or with antibiotics. Early detection and treatment helps to prevent suffering, disability and death. Also, owing to the rapid progression of the disease, high mortality rate associated with its acute phase and stigmatisation, cases of noma remain undetected because they are mostly in hiding.
Insufficient data, case detection and surveillance
At this year’s commemoration of World Noma Day, organised by the Federal Ministry of Health, in collaboration with WHO and other stakeholders, paucity of data on noma formed the thrust of conversations. Discussants and stakeholders unanimously agreed that Nigeria does not currently have sufficient data capturing for noma cases that will transform its declared resolve to end the disease prevalence beyond words and rhetoric.
The reason that the silent assassin called noma continues to kill people in Nigeria, especially the young ones, is majorly because the country lacks proper data capturing and detection of the disease. In August this year, the Federal Ministry of Health, in collaboration with WHO and other stakeholders, developed the National Noma Policy Document and the Triennial Noma Control Action Plan (2019-2021), which was approved at the National Council on Health.
Even though experts applauded this as a right step in the right direction, it is still very sad that as a country, after several years of identifying the killer disease, Nigeria is yet to have sufficient data on it, save for some sparse data from a few hospitals like the Noma Children Hospital in Sokoto. Many believe this is a reflection of the level of neglect of the disease and the level of commitment of the government to translate policy documents from thin paper to thick action.
According to the Minister of Health, Dr. Osagie Ehanire, data from the Nigerian Centre for Disease Control (NCDC) reveals that noma is found everywhere in Nigeria, but it is predominant in the Northwest. “We have embarked on a number of national trainings, step-down trainings and sensitisation activities in high-burden states such as Kebbi. Sokoto, Jigawa and AkwaIbom, in collaboration with the National Orientation Agency and Nigerian Centre for Disease Control, to increase surveillance, case finding and prompt disease reporting,” he said.
The Head of Dentistry Division of the Federal Ministry of Health, Dr. Bola Alonge, said there are proven strategies that have been shown to reduce the burden of the disease. This, she said, includes improved nutrition, exclusive breastfeeding in the first 6 months, immunisations and prioritisation on poverty reduction. Dr. Alonge further explained that, “We don’t have statistics; that is why we want to do our best to look for grants to find out the statistics. Apart from the works of Medecins Sans Frontieres (MSF), we also have Hilfsaktion Noma e.V., that is coming to establish a craniofacial Noma Center in Abuja.”
For the Assistant Director of Prevention Programmes and Coordination of the Nigeria Centre for Disease Control (NCDC), Dr. Fatima Saleh, the Integrated Disease Surveillance and Response (IDSR) framework is a framework that has been backed by policy in Nigeria, being adopted to be used as surveillance for 41 priority diseases the country has. “You will recall that before the advent of the IDSR, disease surveillance has been silenced. So the IDSR is actually brought in to fill these silos gap in a way that is now integrated. All diseases are using the same system and resources to report all the diseases that are of priority by the WHO African countries.
“Early this year, the NCDC wanted to see how we can do a surveillance of the noma disease very well. So we thought of getting reliable information on what is in existence and the challenges in the system, so that we will identify the gaps and come up with recommendations that will fill those gaps. One of the gaps we identified was that noma is not being reported immediately but monthly, especially for a disease that is largely in hiding from the public. We decided that it should be something to be reported immediately not monthly, so that when we find these cases, action can be taken.
“Also, there has not been a data capturing tool for noma before now. So, we developed the data capturing form for noma which we call the ‘data investigation form’, where relevant information can be sourced. Anyone carrying out a research on noma can use this data base. Another gap we found in the surveillance system is timeliness of reporting and the incompleteness of the data. That was why we thought to come up with a data capturing tool to be able to capture all the variables that could guide granola analysis of the risk factors and other epidemiological studies.
“The human resource gap is also there. Capacities need to be built among the surveillance officers. Noma as a disease is not well known, even among health workers. Therefore, health care workers need to be trained to be able to identify and pick this disease and record appropriately; this will form reliable data for policy makers to be able to make informed and enlightened decisions and policies around the control of noma”.
A disease of poverty
Noma is mostly prevalent in rural communities where there is a high level of poverty and ignorance, and the preoccupation of the people is either farming or nomadic husbandry. Therefore, noma is often referred to as ‘the face of poverty’. Poverty and malnutrition are the main risk factors for noma, but others include poor oral hygiene and diseases such as HIV, malaria and measles. According to the WHO, in addition to known factors such as malnutrition, coinfections – measles and malaria – and poor oral hygiene, a number of social and environmental factors such as maternal malnutrition and closely-spaced pregnancies that result in offspring with increasingly weakened immune systems, could be strongly related to the onset of the disease.
However, a major problem is that most patients with noma worldwide do not have access to medical facilities because they are either not available or too expensive. Patients are forced to consult traditional healers, whose unscientific methods of treatment will lead to deterioration in the patient’s condition. Noma is a disease that can be prevented completely by increasing the level of economic welfare for the poorest people in society. With the 2018 report by World Poverty Clock showing that Nigeria has over 86 million people living in extreme poverty, it becomes increasingly difficult to combat noma even with the right data capturing tools and enough man power.
According to the Chief Medical Director of the Noma Children Hospital Sokoto state, Dr. Mustapha Danjega, one major challenge in addressing and eradicating noma is the economic part of it, which plays a very critical role. “When you bring a noma patient, you have to feed him or her, give them some to take back; it is all in the expense of our sponsors – the Sokoto state government. Some noma patients do not require operative surgeries; so we have to give them a kind of nutrition, and they have specific things that they eat to be healthy. We are having a lot of inadequate funding. Honestly speaking, with the economic problems facing the country itself, funding has been epileptic. We have not been getting funding when they are needed, which distorts our supply to our patients, especially when we have to give them drugs,” Danjega said.
Social stigma
Life has been hell for 28-year-old Usman Mohammed, living with horrifying disfigurement of his face, as a lot of people do not consider him worthy of any form of interaction, let alone see him as a human being. According to him, people usually run away from him anytime they see his face. He added that it is so frustrating that he can hardly strike up a conversation with people, especially members of the opposite sex.
He explained that as the first son of his impoverished parents, it is also very difficult for him to get a job to help provide for the family because of the huge discrimination in the society. “It took me several years before I was able to secure a decent job, as most employers would at first glance reject me without considering my skills, experience or qualification. It is very sad and frustrating,” he said.
Mrs. Mulikat Okanlawan, a survivor of noma, explains her journey and the tales of shame she had to grapple with every day. According to her, “My experience before my surgery was not easy because being in a situation like this, I could not come out because people do not want to interact with me. Even when I look at myself in the mirror, it breaks my heart. My parents explained that they did not know the cause but could recollect that I was developing high temperature, which they thought was malaria.
“They later discovered something like boil on my face. They thought it was a small thing, but did not know it would result to a deformation of my face. My joy today is that there is a solution to my problem and the problems of many other people down with noma due to the timely intervention of MSF, FMoH, and other organisations. Parents need to pay close attention to their children and bring them to the hospital for treatment when they notice unusual growth on the cheek of their children. We need to raise more awareness about the Noma disease so that they can get help and treatment (surgery) and begin to see themselves as human beings because there is still ability in disability,” Mrs. Mulikat said.
Dr. Danjega added, “Because of the level of stigma, we had to go and trace the Noma cases ourselves because they are in hiding, and nobody wants to come out and interact because of the deformity; they are being exempted from the society. We had to go to a lot of rural areas to encourage them to come to our hospital”.
Furthermore, there are a lot of misconceptions concerning noma that make a lot of people treat people living with noma with contempt and disdain. Truth is, noma is not transmitted from one person to another, and it is not a contagious disease. Also, noma is not caused by witchcraft or a result of ancestral or generational curses. However, common signs to watch out for are when a child’s mouth is closed and when he or she hyper-salivates and emits fetid breath with a putrid smell, regardless of whether they have fever or not. Parents or guidance need to be more vigilant when the child is malnourished with a case history of spotted fever (chickenpox, measles) in the preceding months or even weeks. Regular oral examination of children at home or during medical visits is an indispensable action that helps identify gum lesions that may develop into noma in at-risk subjects.