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Living With Noma, A Gangrenous Disease



Noma disease may sound strange to many people but this facial disease is gradually creeping into the country. CHINELO CHIKELU reports

Mulikat Okonlanwo is now a graduate, it didn’t come easy. In deed, at a time she dropped out of school and even went into hiding to avoid being seen by people.

What could be wrong with her? Her story is that of one saved from the jaws of death. She was inflicted with a rare disease called Noma, an orofacial gangrenous disease that attacks one in the face and disfigures it if proper surgeries are not done.

That was the lot of Mulikat who lived with the disease for over 20 years of her life. She was merely eight years old when she was afflicted with Noma which disfigured face making her face repulsive to people.

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, Sokoto where she was operated upon by the Dutch Noma Foundation.

“People didn’t want to associate to me,” she began her story. “I couldn’t go out in public. I ran into hiding when I saw people, because I didn’t want them to say hurtful things to me.

“I only went 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. It was only after that that, Mulikat was able to return to school. She is already a graduate and is now a hygiene worker at a hospital in Sokoto.

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.

This story of Mulikat came up recently at the screening of ‘Restoring Human Dignity’ a documentary production by Inediz Media. The documentary is aimed at increasing awareness about the non-communicable disease.

Dr. Adolphe Fotso of Medicin Sans Frontiers (MSF), a group of experts working on the Noma project at the Noma Hospital, Sokoto, used the occasion to inform that since his group started work in 2015 and that 11 out of the 281 diagnosed Noma patients identified within its specific research area, Sokoto state, have died.

He said the 11 casualties formed part of the 281 patients who had more than one surgery each totalling up to about 506 surgeries MSF conducted between August 2015 and 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.

He explained that Noma, is an orofacial gangrenous disease that has been found across the African continent and other parts of the world. He said it is prevalent among children but also seen amongst adults. “Noma has a high mortality rate especially if patients are without medical intervention, and survivors are left with severe disability and disfigurement,” he said.

“There is no known cause of Noma, although a bacterium, fieso bacterium necropherium, is associated with the disease.

“A number of factors increase the risk of Noma, including; malnutrition and poor hygiene, which is why we stress healthy hygiene and adequate breast-feeding of child. We find also increased risk of Noma as a result of non-completion of immunization treatment.

“To tackle Noma, you need a holistic approach that addresses all the situations involved.”

Since MSF Noma project took off in 2015 at the Noma Children Hospital in Sokoto State, the organization has received patients from Niger, Delta and some other Northern States. To bridge 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.

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.

As part of this collaboration with the ministry, a national day of Noma is scheduled to hold on the 19 and 20 of November, at the Yar’adua Centre, to address the disease, issues around it and more capacity to fight it.

MSF Head of Mission in Nigeria, Philip Aruna, said the goal of the conference is to 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), Zaria, 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.

Fotso said the advocacy is to enlighten people on the need to take preventive action upon detection of gingivitis – gum bleeding, during teeth brushing, which is the early stage of the disease by going 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 and requiring complex surgeries,” Fotso said.

He further noted that four researches are ongoing to determine risk factors; 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,” he said.

“We are collecting data and by 2019 we will be able to give more information on the disease.”