Of all the leaflets to land on my desk this year the most distressing must be the one about noma. The pictures of children with shocking facial deformities were so upsetting that I found myself hiding it under my to-do pile so that I didn't have to look at it.

Noma is a disease which chews up a child's face in a matter of months, leaving them so disfigured that they will never be able to eat, breathe or speak normally again.

The disease mostly affects children between the ages of two and six. Most die, while those who survive are ostracised by society, school and friends. And the heartbreaking thing is that it would cost almost nothing to prevent.

Today is World Noma Day but if you've never heard of the disease it's not surprising. Unlike AIDS or polio, it only affects the poorest of the poor. And because noma isn't contagious, it's nobody's priority.

"I just find it so tragic that nobody seems to know about this and the families who are unfortunate enough to have a child that gets noma have nowhere to turn," says Chris Lawrence who set up the charity Facing Africa, which sends surgeons to Ethiopia and Nigeria to reconstruct the faces of children with the disease.

Noma starts as an oral lesion that becomes gangrenous, rapidly destroying soft tissue and bone, but it can be stopped with common antibiotics if caught early. The cause of the disease is unclear but appears to be down to a deficiency in the immune system due to malnutrition.

The U.N. World Health Organisation (WHO) estimated in 1998 that there are about 140,000 cases a year, and 70 to 90 percent of the children who get noma die. But it's difficult to get a clear picture because the disease affects isolated, rural communities - mainly in sub-Saharan Africa - where records are non-existent. On top of that, children with noma are often kept concealed.

"Because it is such a horrendous disease visually the parents hide the children," Lawrence says. "It's called a disease of the shadows because they are just kept hidden away. They are socially ostracised. Visually, it's so alarming that kids will not play with other kids who have that affliction."

What is desperately needed is education in rural areas so that parents can spot the disease early.

"If the mothers of these children could identify it in the first place a mild antibiotic gets rid of it very quickly," Lawrence says.

The lack of basic medicine and healthcare is a major problem. Lawrence says there are more Ethiopian doctors in Washington DC than in Ethiopia. The cost of sending out medical teams to carry out reconstructive surgery is about £500 ($1,000) per child in Ethiopia and £800 ($1,600) in Nigeria.

The first World Noma Day is backed by former U.N. Secretary-General Kofi Annan. The International No-Noma Federation in association with WHO and the World Dental Federation will be launching a world campaign in Geneva today to eliminate the disease. Scientists, specialists in reconstructive surgery and WHO representatives will also be holding a conference looking at research and treatment.

For more information go to Winds of Hope Foundation, which has launched projects to tackle the disease in six African countries. Other groups helping children with noma include the Dutch Noma Foundation and the Noma Children's Hospital Sokoto in northern Nigeria.

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