Nonprofits Urge Addition of Deadly Noma Disease to WHO List

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The disfiguring disease noma, found mainly in poor areas of sub-Saharan Africa that lack health care, kills 90% of victims, most of them children, when left untreated. Noma is preventable, and to that end, aid groups are urging the World Health Organization to add Noma to its list of neglected tropical diseases.

Eight-year-old Amadou Compaore recently recovered from noma, a little-known tropical disease.

Although noma has scarred his face, Compaore, relatively speaking, is one of the lucky ones. If noma is diagnosed within the first few weeks of infection, it is easily treatable with a course of antibiotics.

His father, Sibiri Compaore, told VOA, he noticed the disease in the run-up to Christmas. To begin with, Amadou said his mouth ached to the point where he couldn’t eat anymore. He even had great difficulty drinking sachets of water.

Compaore senior took his son to the nearest city, Kaya, about 25 kilometers away, where medical staff were able to identify the disease thanks to awareness building by the Swiss non-governmental organization Sentinelles.

Sidi Omar Boena is a nurse at a Sentinelles medical center in Ouagadougou, specializing in the treatment of noma.

He says most health workers in Burkina Faso have not heard of the disease noma and that diagnosing it in people 400 to 500 kilometers from Ouagadougou is very difficult.

He says that he is sometimes forced to diagnose noma with photos sent to him via WhatsApp.

Odette Serene, who also suffered from noma, now receives regular follow-up treatment at the Sentinelles clinic, including support in finding a job.

She now works as a tailor, but she says people still laugh at her, which makes her sad. She says Boena has done a lot to take care of her, however.

Noma is just one of many illnesses currently missing from the World Health Organization’s list of neglected tropical diseases.

Doctors Without Borders, a medical NGO, is running a campaign to have noma added to the WHO list, which already includes diseases like rabies and dengue fever.

“Of course, at the community level, there is discrimination affecting the patients, and so every time there is a case, we might not even be aware because patients are hidden by the communities or they are dying. More than 90% of people are estimated to die,” Jeantet said.

The WHO says when it adds diseases to the list, factors like social stigma and death rates are taken into consideration. The WHO says resources are limited, so some diseases have to be left off.

WHO press officer Ashok Moloo explains the effect of adding a disease to the list.

“It really brings the disease or the condition to another level … It also adds to the advocacy part of the disease, awareness creation and also resources,” Moloo points out.

As for Amadou Compaore, he says what the doctors have done to help him has been an inspiration. He told VOA he wants to become a doctor, to treat people so that they can be cured, like him.

The WHO plans to make possible new additions to its neglected tropical disease list in 2023. It remains to be seen if noma will be among them.