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/ A NEGLECTED DISEASE

 

Noma is a neglected disease that affects people living in poverty. It’s an infectious but non-contagious bacterial disease that starts as an inflammation of the gums, similar to a small mouth ulcer. The infection destroys the bone and tissue very quickly, affecting the jaw, lips, cheeks, nose or eyes, depending on where the infection started.

 
 

It takes just days for noma to leave survivors with severe facial disfigurements that make it hard to eat, speak, see or breathe. On top of that, survivors must deal with the social stigma caused by the horrific damage done to the face.

Noma mostly affects children under five years old who are living in poverty. Poverty and poor health are the main factors behind the infection that leads to noma. Children with malnutrition, bad oral hygiene and diseases such as measles or malaria are particularly susceptible to noma.

People who survive noma have only one choice if they want a better life: they must undergo extensive reconstructive surgery.

How many people die of Noma?

 
90%

of the people affected by noma die in the first two weeks if they don’t receive treatment in time. That’s why early detection and awareness raising campaigns are so important for a disease that affects 140,000 children every year. *

 
 

*These numbers are an estimate that the World Health Organization (WHO) made in 1994. This shows how ignored and neglected this disease and its survivors are.


Where do you find noma?

 

Noma is most prevalent along the so-called African noma belt, which stretches across the Sahara from Senegal to Ethiopia. But cases have also been identified in Asia and more recently in Europe and the United States in patients with poor immune systems.

The disease was first reported by Hippocrates in the 5th century BC. The first medical description of noma was in 1595, when it was called ‘water cancer’. In Europe, cases were also reported in concentration camps during World War II.


What are the symptoms?

 

Noma starts with gingivitis, an inflammation and bleeding of the gums. In three or four days, an ulcer appears and the gums and cheek begin to swell. Before a week has passed the disease has eaten away cheek tissue and a hole appears. In the following days, the infection spreads and gangrene covers the affected area. Depending on where the infection has started, it quickly destroys the jaw, lips, cheeks, nose or eyes.

 

 

Is Noma preventable and treatable?

 

Noma is absolutely preventable, but only if there is knowledge about the disease and how to treat it. Good nutrition, oral hygiene and access to healthcare and vaccinations against childhood diseases all help to prevent noma.

Noma is treatable if detected and managed during the first weeks of the disease. With basic oral hygiene, antibiotics and wound dressing a patient can fully recover from noma within a few weeks. This is helped by managing underlying risk factors, such as malnutrition and other diseases like measles.

 

 

If it is easily treatable, why do people die from noma?

 

People die from this easily preventable and treatable disease because of the lack of knowledge surrounding noma. Early detection is low and once noma attacks, many families don’t have access to or can’t afford the antibiotics to treat it. Most of the people with noma live in poor and isolated areas, where access to health and dental care is almost non-existent.

Little is known about noma. It develops quickly, so the parents of a child with noma usually don't know how to identify the disease. They seek help in their community or from traditional healers, losing precious time and the opportunity to properly treat the infection.



 

Sufyanu, before and after noma

Sufyanu is three years old and lives in a village in Sokoto state, Nigeria. When he first arrived at Sokoto Noma Hospital, he was already acutely sick and his face was disfigured. He was also malnourished, one of the major factors that leads to noma.

Sufyanu was treated in the nutritional unit: he was given antibiotics and his wounds were cleaned and dressed. When he regained strength, he was discharged and went back home. Sufyanu will have to wait until he is older before he can have reconstructive surgery on his face. This is because the effects of the disease and the scarring changes as children grow.

When Sufyanu first arrived at the hospital, he was treated in the nutritional unit; he was given antibiotics and his wounds were cleaned and dressed.
Sufyanu recovered at the hospital, where he and his family met other patients with noma. They will come back when Sufyanu is ready for surgery.

Patient journey: from infection to treatment

 

Living in isolated and extremely poor places, noma patients are difficult to find. For some of them, reaching a clinic or hospital is almost impossible because they are usually located hundreds of kilometers away. Even people who can access treatment sometimes don’t have the money to pay for medical care in their local clinics.

Timeline

July 25

1. First symptoms

1. First symptoms

The child is tired and doesn’t want to eat. He or she is losing weight, is weaker every day and has a fever. The worried mother is not able to help because she can’t identify the disease that is attacking her child.

July 25

2. Appeal to the community

2. Appeal to the community

The mother seeks advice in her community. Nobody knows what’s happening to the child and they suggest traditional remedies. As the disease spreads, more visible wounds appear and the child is isolated for fear of contagion.

July 25

3. Traditional healers

3. Traditional healers

The child is referred to a traditional healer who tries to cure him or her with natural remedies. They don’t work because only antibiotics can stop the disease from spreading quickly. The child’s condition deteriorates.

July 25

4. Reaching the nearest clinic

4. Reaching the nearest clinic

The mother goes to the nearest clinic which is some distance from their isolated village and takes several days to reach. When they arrive, they face two new obstacles: the lack of knowledge about noma and the cost of treatment. If they can pay for antibiotics, the child will recover. If not, the mother will go back home empty-handed and, usually, in a few days her child will die.

July 25

5. Arrival at the hospital

5. Arrival at the hospital

On the radio, the mother hears about Sokoto Noma Hospital, where they treat people with conditions similar to her child. They call the disease “noma”. In the hospital her child can receive free treatment and reconstructive surgery.

August 30

6. Starting treatment

6. Starting treatment

Once admitted to the hospital, the child receives nutritional treatment to stabilise his or her condition and recover strength. The child's wounds will be dressed and the doctors will check if he or she is a candidate for reconstructive surgery. Because the wounds are complex and change over time, small children have to wait until they are older before they can have surgery.

Restoring dignity
After a few weeks, Mohammed’s face was destroyed by noma. He arrived in the hospital severely malnourished because it was too difficult for him to eat.
 

Mohammed, when the treatment is too far away

 

Grema lives with his family in a city in Yobe state, Nigeria. When his son Mohammed got sick, they didn’t know that it was noma and they didn’t know where to find help. Finally, someone told them about a hospital in Sokoto town where patients can receive free medical treatment for noma. They arrived after a two-day trip. By then, little Mohammed’s face was already disfigured and his condition worrying because of malnutrition.

 
 
Grema shows a photograph of his healthy son Mohammed before he was diagnosed with noma and became disfigured by the disease.

Footnotes: Drawings & infographics by Chloé Fournier / Pictures & Videos by Claire Jeantet & Fabrice Caterini © Inediz - All rights reserved