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 * WHAT IS NOMA?
   Maryam is four years old. She arrived with her mother at Sokoto Noma
   Hospital, in Nigeria, in March 2016 to undergo reconstructive surgery.
   




 * WHAT IS NOMA?
 * SOKOTO NOMA HOSPITAL
 * SURVIVING NOMA
 * NOMA DOCUMENTARY
 * EN
   * AR
   * DE




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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 seven 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?

 
Up to
90per cent

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

 

 

*These numbers are an estimate that the World Health Organization (WHO) made in
1994. The fact this data has not been updated in more than 25 years, shows how
neglected this disease, and its survivors, are.

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WHERE DO YOU FIND NOMA?

 

Noma is most prevalent in low-income settings in Africa and Asia. Noma used to
occur widely in Europe but disappeared as living conditions and access to
healthcare improved.

The disease was first reported by Hippocrates in the the fifth 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.

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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.

 





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WHAT ARE THE CONSEQUENCES?

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Many people who survive noma are at great risk of dying from secondary
complications. They experience physical and mental consequences which isolate
them from their communities and can cause mental health problems. Many people
also have difficulty speaking and eating and face stigma and discrimination in
their communities because of their facial disfigurement. Children can experience
developmental delays because of their social isolation, or from the impact of
childhood diseases linked to noma, such as measles and malaria.



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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 recover
from noma within a few weeks. This is helped by managing underlying risk
factors, such as malnutrition and other diseases like measles.

 


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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.

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Sufyanu, aged three, returned to his home in northern Nigeria with his parents
and siblings after being treated in Sokoto Noma Hospital. He has to wait until
he is older before he can have reconstructive surgery. This is because the
wounds are complex and continue to change during a child’s growth.

Sufyanu, aged three, returned to his home in northern Nigeria with his parents
and siblings after being treated in Sokoto Noma Hospital. He has to wait until
he is older before he can have reconstructive surgery. This is because the
wounds are complex and continue to change during a child’s growth.

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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.

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PATIENT JOURNEY: FROM INFECTION TO TREATMENT

 

Living in isolated and extremely poor places, noma patients are difficult to
find. For some, reaching a clinic or hospital is almost impossible – they may be
located hundreds of kilometres away. Even when people can more easily access
local clinics, often they don’t have the money to pay for medical care.


TIMELINE


JULY 25


1. FIRST SIGNS

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


JULY 25


2. APPEAL TO THE COMMUNITY

The mother seeks advice in her community. Nobody knows what’s happening to the
child – some 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

The child may be referred to a traditional healer who tries to cure them 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

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


JULY 25


5. ARRIVAL AT THE HOSPITAL

Once admitted to the hospital, the child will receive antibiotics and
nutritional treatment to stabilise her/his condition and recover some of her/his
strength. The child’s wounds will be dressed and the doctors will check if s/he
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.


AUGUST 30


6. STARTING TREATMENT

Once admitted to the hospital, the child will receive antibiotics and
nutritional treatment to stabilise her/his condition and recover some of her/his
strength. The child’s wounds will be dressed and the doctors will check if s/he
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.


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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 young 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 but it was too late. Little Mohammed’s face was already disfigured
and in a worrying condition, because of malnutrition.

 

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


VISIT SOKOTO NOMA HOSPITAL >

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



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