(formerly IRIN News) Journalism from the heart of crises

Children made faceless by a disease of neglect

Through clenched teeth and with the assistance of an adult interpreter, Noufou stuttered out his tale. He had lost both his parents, was made homeless and lived on the streets. Then one day he woke up with blood in his mouth. Within two weeks half his face had slid off leaving a gaping hole that exposed his jaw.

Playing with other survivors of noma, a gangrenous disease, in the dust behind a medical clinic in Burkina Faso capital Ouagadougou, Noufou seemed shy but willing to proffer a smile accompanied by a laugh, which caused his mangled lips to splutter. The children all had bandages and sticking plaster holding their half-eaten faces together.

Noufou is 16 years old, but he has the physique of an eight year-old having grown up all his life with malnutrition.

The exact cause of his disease is unknown but it is thought to be a bacteria, or fusospirochetal organism, that preys on severely malnourished children between the ages of two and five years of age who live in unsanitary conditions. It is often preceded by other illnesses such as measles, tuberculosis or immunodeficiency.

Around 80 percent of those children who develop noma die within weeks, suggesting that the number of documented cases is just the tip of the iceberg.

The cure is a course of common antibiotics, such as amoxicilline and metronidazole, but children who get the disease rarely have access to even basic health care.

“It’s because they are poor, very poor,” Patrick Joly, head of the Africa programme of the Swiss non-governmental organization (NGO) Sentinelles told IRIN. Anaemia, lack of access to clean water for drinking and washing, and poor education all contribute, he said.

“That’s not a scientific explanation, but that’s the reason why,” he said.

How it starts

Noma starts with just a simple ulcer and bleeding in the mouth. If nothing is done then the gangrenous disease spreads quickly, rotting the cheeks and forming a black scab.

“When the scab falls away days later, it takes with it all the flesh from the mouth, leaving the jaw exposed,” Joly said.

Noma occurs in south-east Asia and across Africa from Ethiopia to Nigeria bu it is in the West African Sahel that it hits hardest. Most cases occur in Niger, where Sentinelles has 800 children on file, followed by Burkina Faso where it has 300.

Both countries have the highest rates of malnutrition in the world with up to 50 percent of children underweight and undernourished.


Photo: Nicholas Reader/IRIN
A girl suffering from the noma disease at a Sentinelles clinic in Ouagadougou

Why the disease spreads so fast and destructively is currently being studied by researchers at the University of Geneva in Switzerland. But for Joly, the research is only academically interesting. “The people who suffer the most from malnutrition and have the poorest health care are the ones who get it. This is not a transmittable disease,” Joly said.

HIV-fears


Adults with immune systems weakened by HIV have contracted noma in Burkina Faso, Joly said, a first in the world, raising the prospect that the disease could start occurring in larger numbers of infants and children born infected with HIV/AIDS in Africa.

Sentinelles is training health workers in Burkina Faso to recognise the symptoms early, visiting health centres, dispensaries and traditional healers which are usually the first port of call for most sick people in the country.

But noma is still not taught at medical schools in Burkina Faso and reconstructive surgery in Burkina Faso is only practiced by four surgeons who visit each year from Europe.

Usually the children cannot be operated on until they reach 16 years old as their natural growth would tear the surgery.

Noufou, now 16, has thick raised welts on his back and the side of torso, a testimony to the succession of agonizing skin grafts doctors have conducted in an attempt to close, if not completely reconstruct, his face with skin from elsewhere on his body.


Photo: Nicholas Reader/IRIN
Noufou after his reconstructive surgery

Overcoming the stigma

Doctors say that since his operations Noufou is less introverted than before. He has started talking about wanting to become a motorcycle mechanic.

Discrimination is nonetheless common among the children even after their reconstructive operations. ‘Whatever you do, you will never be like us,’ is the line children at 15 year-old Zougmore Assame’s school in eastern Burkina Faso chant at him.

Still Assame says he wants to be a school teacher, though Sentinelles staff said his own teachers have rejected him, forcing him to sit alone at the front of the class.

A lot of families will hide their sick children at home, believing that the disease is a punishment from God, Joly said. “While their children are dying, terrified in agony, they are considered to have become devils”.

Organisations working on noma
Sentinelles
Facing Africa
Les Enfants du Noma (The Children of Noma)
The Dutch Noma Foundation
Interplast Germany

The solution, Joly said, is to help ordinary people in rural villages and towns recognise the disease for what it is and take their children with symptoms to be treated as soon as possible, before the disease escalates.

While the organization is working to educate people, ultimately as long as malnutrition and poverty are rampant in Burkina Faso, noma will exist. “There’s no point talking about a war against noma,” he said. “There needs to be a war against poverty.”

nr/dh

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