FUNDING is needed to cure a common illness nobody has heard of, one sufferer has warned.

David Edgerton, 55, was diagnosed with Type 1 neurofibromatosis in 1977 when he underwent surgery for a brain tumour.

The former security advisor, from Deptford’s Pepys Estate, has developed lumps on his body and some underneath the skin, and his condition has worsened over the years, leading to him having part of his bowel removed in 2008.

He said: “I’ve learned to live with it. People just see the lumps and bumps on your skin.

“It hasn’t affected me badly until now. At the moment my body aches from my shoulder down to my knees.

“At the same time my whole body is itching. I feel tired a lot but the condition makes sleeping difficult.”

Mr Edgerton, a former councillor for Lewisham, says that unless more people are made aware of the condition there will never be enough funding to find a cure.

He has further reason to be worried because the condition, which is caused by a genetic mutation, has been passed down to both his children.

Mr Edgerton explained: “It’s just as common as cystic fibrosis or muscular dystrophy. There’s one child born every day with the condition but no one’s ever heard of it.

“There just needs to be more awareness of it. Even GPs don’t know anything. People normally say ‘neuro what?’”

For more information on the illness visit the Neurofibromatosis Association website at

Neurofibromatosis facts

It is a genetic disorder that affects the nervous system and the skin.

Coffee-coloured birthmarks known as café-au-lait spots on the skin are one of the first signs, usually present at birth.

It can affect anyone regardless of family history, gender or ethnic background.

Type 1 causes patches on the skin, benign tumours to grow on nerves and learning difficulties.

One in 3,000 people have Type 1 neurofibromatosis Type 2 is more rare and can cause tumours on the brain and spine, deafness, reduced vision and mobility problems.

There is no cure for neurofibromatosis, but any medical problems caused by the condition can be treated.