Interview on the disease Noma: "The ten percent who survive are often hidden by their families"

Ms. Casti, you are a nurse and work for Doctors Without Borders.

You worked for nine months in a clinic in Nigeria that treats noma patients.

What is this disease?

Eva sleeper

Editor in the "Life" department of the Frankfurter Allgemeine Sunday newspaper.

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Noma is a serious bacterial infection that develops on the lining of the mouth and from there eats away at other soft and bony parts of the face.

It occurs in rural areas of South America, Asia and Africa, including northwestern Nigeria.

The problem is: Noma starts off very non-specifically.

The children may have bleeding gums, the palate is red.

It's not urgent at the moment.

But it becomes acute very quickly.

By the time people around you react, it's usually too late.

Only children get sick?

Yes, between the ages of two and seven.

Around 140,000 children are affected worldwide every year.

This is a WHO estimate from 1994, which has not been updated since then.

The number of unreported cases is probably high, since 90 percent of the children die - and that within a few weeks if the disease is not treated in the first few days after the onset.

The risk factors are malnutrition, lack of vaccinations and diseases that weaken the immune system, such as measles, tuberculosis or HIV.

The ten percent who survive are often hidden by their families or sometimes do not return to their villages of origin.

Or only after they have received reconstructive surgery treatment in the hospital.

How do you have to imagine the suffering of these children?

On the one hand, this depends on how quickly noma is recognized and treated.

On the other hand, it depends on which parts of the face are affected: jaw, lips, cheek or nose.

Distortions usually occur, making it difficult to eat, speak, see, and breathe.

If the cheek is affected, it can happen that the wound extends from the eye, which is sometimes also affected, to the jawbone, and actually only half of the face is there.

The survivors suffer a lot, physically, but of course also mentally.

The disfigurement stigmatizes them greatly, they are excluded from society and they feel very alone.

How are patients treated in the acute phase?

In the hospital, her wounds are cleaned and treated and bandaged every day.

The children are given antibiotics and therapeutic feeding as most are malnourished.

They receive physiotherapy and psychosocial support, both the children and the person they came with;

usually this is the mother.

On average, it takes six weeks before most patients can eat and speak independently again.

During this time they are usually also immunized.

This means: You get the vaccinations that are intended for childhood.

And what is the further treatment?

The children come to the hospital regularly for follow-up appointments.

We check how their nutritional situation is, vaccinations are refreshed, we look at the wounds.

Mental health is also very important.

It looks at how well the child is integrated and how the parents deal with the situation.

Once the child is stable and slightly older, facial reconstruction surgeries begin.

This starts around the age of six.

What is the purpose of these operations?

The most important thing is that physically everything is right again: that the patients can open and close their mouths, eat and speak and swallow easily.

In the second step, an attempt is made to reconstruct the defects to such an extent that they can regain a face and participate in life.

Depending on how severe the defect is, several consecutive operations may be necessary.

The doctors need a lot of experience.

What can you do preventively?

Good nutrition, dental care and childhood vaccinations are preventive measures.

A team from Doctors Without Borders goes into the villages, does educational work, looks at what the children look like, whether there is any awareness of oral hygiene, trains volunteers who live in the community.

The aim is to create a network through which information about Noma can be passed on.

The traditional healers in the villages are also included in the education, since the mothers usually go there first when their children fall ill.

During your time in Nigeria, have you met any adults who have survived the disease?

What kind of life do they lead?

Once they have had surgeries and learn to manage their resulting bodies, many manage to lead normal lives.

I met adults in the hospital who are married, have started a family, are alive, are not excluded.

That's nice to see.