Around five per cent of the multiple sclerosis(MS) sufferers in the UK are children, but centres exclusively devoted to them are few and far between. Also there are not enough data available on the incidence, they say.
The chronic condition, traditionally associated with adults, affects the central nervous system creating symptoms of fatigue, loss of mobility and eyesight, and can result in long-term disability.
It took doctors four years to diagnose that the 16-year-old Karen Pumpuni of South London was suffering from MS.
The girl was completely in the dark about the disease, which affects twice as many women as men. "I had heard about MS but I didn't know the symptoms like you would if it was cancer," she said. "I didn't know if it was something severe or something which could be easily treated like asthma." Two years on from her diagnosis she still feels isolated by the disease. She admits: "I feel like nobody understands what I go through."
The MS Society is hoping that its first ever conference on childhood MS, being held Wednesday in London, will go someway to help raise the public and health profession's understanding of the life that Karen and other young people like her face. The charity hopes that the conference will be the first step in the UK towards recognition of the condition in children, taking the lead from US and Canada.
The conference will aim to decide best practice for children with MS in the UK and look to where services need to be developed. At the moment the UK has only one dedicated centre for children with MS at the Birmingham children's hospital, and even there, no specialist MS nurses are trained to work with children.
Dr Evangeline Wassmer, the paediatric neurologist who heads the unit, says: "A lot of children with MS get seen by adult neurological services or get some shared care with paediatrics. It's a big issue - they are children and they need to be communicated with as children, it's not just a question of talking to their parents."
Dr Wassmer wants more dedicated MS children's centres and national prescribing guidelines changed so that the disease modifying drugs available for MS can routinely be given to children without prior approval of their primary care trust.
She is also keen to establish a longitudinal study of MS in children so that the disease can be tracked from a young age to adulthood. "At the moment we don't have that data, we don't know what happens to the disease if its onset is in childhood."
Dr Anita Rose, a specialist clinical psychologist for people with MS at the Walton centre of neurology and neurosurgery in Liverpool, wants the UK to follow the US model and establish summer camps for children with MS as one way of breaking down their isolation. Social networking websites and YouTube could also be used, she suggests, to put young people in contact with each other.
She says: "It's a very isolating diagnosis. Children are very often scared, they get angry and depressed. They may know it's not a terminal condition, in fact the first question they ask is 'Am I going to die?' But they realise they may become disabled, that it's a life-long condition and they could be in a wheelchair by the age of 25."
This September the MS Society committed itself to dedicating "a year of youth", provisionally for 2009. This will highlight the issue of childhood MS, what it means for children and their families, as well as those young people who care for an adult parent with MS.