Noma is a gangrenous infection of the mouth and face. Its name comes from the Greek word “nomē”, meaning to devour.
The disease is known for eating away at tissue, leaving survivors with grotesque facial disfigurements. These can cause life-threatening impairments and crippling social stigma.
Noma mostly affects children under 10, from poor, remote communities in Africa.
The World Health Organization estimates that around 140,000 new noma cases emerge every year. Up to 90 percent of patients who do not receive treatment die – only 10 percent of people in the acute phase of the disease are thought to attend treatment.
Médecins Sans Frontières/Doctors Without Borders (MSF) supports the world’s only dedicated noma hospital in northwest Nigeria. Our programme in Sokoto Children’s Hospital, run in collaboration with the Ministry of Health, focuses on outreach, education and surgery.
What causes Noma?
Noma can be devastating, yet it is poorly understood.
It is a disease highly associated with extreme poverty and malnutrition, affecting families living with poor sanitation and oral hygiene.
It was once reported globally, including in Europe and the United States. Cases appeared in prisoners of Nazi concentration camps during World War Two.
As hygienic conditions improve, noma cases tend to decrease. It is now much less prevalent, reported only in countries such as Nigeria, Sudan and Democratic Republic of Congo.
However, there is no one determined cause for the disease. Multiple factors are thought to play their part, and we are investigating this as part of our Noma project in Sokoto.
Importantly, current or recent illness can rapidly progress the onset of Noma. This includes HIV, malaria, malnutrition, measles, or respiratory diseases.
Symptoms of Noma
Noma begins as a severe gum infection (gingivitis), leading to painful lesions (ulcers) in and around the mouth.
It progresses into a necrotising infection which kills soft tissue. As it spreads, Noma ravages the face, lips, and chin, leaving survivors with extensive scarring.
Depending on the stage or severity of infection, disfigurements can vary. Many patients will lose significant areas of their face, leaving the bone underneath exposed.
Noma disfigurements can also cause people considerable health problems. Some patients experience trismus (also known as “lockjaw”) and are unable to speak or chew, leading to malnutrition.
Other symptoms include fever, drainage and loss of teeth.
Noma patients experience high levels of stigma within their communities.
They are often considered cursed, and face exclusion or abandonment as a result. Parents of children infected with noma sometimes stop feeding them altogether.
In our noma project in Sokoto we provide psychosocial care for our patients, and help to rebuild connections between parents and children.
We also provide skills-based activities for adult Noma patients, who have grown up knowing only the stigma surrounding their condition.
We run education and community outreach programmes, seeking to reach patients unaware of our services and to improve public understanding.
Treatment of noma
Without proper medical attention, Noma can be fatal.
Some parents choose to take their children to traditional healers. There have been reported cases of healers using caustic herbs or battery acid to attempt treatment, which can have devastating results.
Early noma infection can be treated simply, with improved oral hygiene or nutrition. Later stages of the disease require antibiotics.
During treatment, surgery is used to remove dead or infected tissue. After some time, the infection will burn out.
Though noma itself is relatively easy to treat, patients are still left with extensive disfigurements which can affect their physical and mental health.
In our noma project in Sokoto, we send highly specialised surgeons to the hospital to operate on patients. This happens four times per year, consisting of one plastic surgeon and one maxillofacial surgeon.
Plastic surgeons are responsible for the reconstruction of soft tissue, whilst maxillofacial surgeons deal with jaw work. Both are specialised in refiguring facial defects.
Multiple operations are needed to treat Noma disfigurements, making recovery a long, gradual process. Some patients will need up to three interventions spanning the course of several years.
Noma is a sad and horrific disease.
But, after completing their course of surgeries and counselling, we see our patients, both children and adults, find a restored dignity.
People are once again able to re-integrate into society.
We see some children able to return to school, some adults finding jobs, and communities and families welcoming back their loved ones.