Geneva University begins major study of Noma disease

Noma disfigures children for life. Keystone / Laurent Gilieron

Geneva University is to step up its research into a little known but deadly disease which kills or disfigures over 100,000 children in Africa every year: Noma. The balloonist, Betrand Piccard, has helped to bring the plight of Noma sufferers to public attention in Switzerland.

Most Noma sufferers are under six years of age. The fatality rate is between 70 and 90 per cent. Those children that survive are disfigured for life, many of them unable to speak, eat or breath normally again. Many are cast out by their communities.

“It’s a truly horrendous disease,” says Gertrude Hirzel, whose foundation has donated SFr1.6 million ($900,000) to the university to study Noma, whose name derives from the Greek word for “devour”.

The disease often starts in the mouth as a benign oral lesion and rapidly destroys both soft and hard tissues of the mouth and face.

“Apart from the terrible pain, without their face, these children lose their identities,” Hirzel says. With her donation, the university has set up the Geneva Study Group on Noma (Gesnoma), which will be one of the few such teams studying the disease.

Over the course of the three-year project, the group will look at the causes and mechanisms of the condition. This will involve going to the Zander region of Niger, one of the worst affected countries, where they will collaborate with the Sentinelle humanitarian organisation.

Noma is a gangrenous condition that flourishes where poverty is greatest and nutrition and sanitation is poorest. Debilitating diseases such as measles and malaria are also believed to be contributory factors. The World Health Organisation (WHO) says Noma is reaching endemic proportions in Africa, especially in the Sahel region.

“There is a clear link with social development,” says Dr Denys Montandon, who heads the Geneva study group. He points out that Noma existed in Europe in the 18th and 19th centuries, but improved living standards helped to eradicate it.

“If every child in Africa could be fed properly, we would see the end of this disease,” he told swissinfo.

Montandon is a plastic surgeon who has been operating on Noma survivors in Geneva and in the field for more than 15 years. He says it takes five or six operations, each lasting between eight and 10 hours to rebuild a child’s face. Often the entire nose, cheek or jaw is missing.

“The aim is to allow them to return to their families and reintegrate in their communities,” says Montandon, who treats around 10 such cases every year in Geneva.

The exact cause is unknown, but Noma, also known as cancrum oris or gangrenous stomatitis, is preventable, if recognised in its early stages. However, most cases happen in the remotest areas, where there are no health care services. Victims often die two or three weeks after the first signs. For this reason, many experts feel that the figure of 100,000 cases a year is an underestimate.

The Geneva team, which is multidisciplinary, will focus its attention on a crucial stage in the development of the condition. At some point, an infection of the gums is transformed into Noma, perhaps as a result of an imbalance in the bacteria in the mouth.

“We want to find those bacteria or viruses, which are not normally dangerous, that are perhaps helping to cause the Noma lesion,” says Denise Baratti Mayer, who will lead the field trip to Niger. She says the difficulty will be finding children who are at this crucial intermediate stage of the disease.

Research like that being conducted by Gesnoma is just one plank of a five-point strategy developed by the WHO to combat Noma. This also includes educating health workers and parents to recognise the disease and to promote oral hygiene, ensuring that the necessary drugs are available locally and helping to provide surgery for badly disfigured children.

This strategy arose from a meeting in 1992 which created the International Action Network Against Noma. The University of Geneva is one of eight Swiss organisations participating in the network.

by Roy Probert