Worldwide survey seeks MS answers

BY Jill McGivering BBC News

Women are twice as likely as men to develop MS

A major new study that hopes to answer key questions about the neurological disease multiple sclerosis (MS) is being unveiled on Thursday.

This first worldwide study is the work of the WHO and the Multiple Sclerosis International Federation (MSIF).

It remains unclear what causes MS but the study says there may be many more sufferers than the estimated 1.3m.

Survey organisers urge governments to invest more in education and services to improve sufferers' quality of life.

Specialist equipment

MS is a degenerative disease of the central nervous system. It typically emerges in young adults and can lead to severe disability.

Click to see a map showing the worldwide spread of MS

Symptoms often include aching, loss of balance, muscle spasm and paralysis and general fatigue.

But there are still many mysteries surrounding MS.

It is not clear what causes it or why women are twice as likely as men to develop it. Or why it is so much more common in colder countries than warmer ones.

There must be many people out there who we just don't know about Peer Baneke, MSIF

The study has found that although most cases occur in the developed world, every country that took part in the survey, rich or poor, had some instances.

Peer Baneke, the chief executive of the MSIF, says the rough estimate of 1.3m cases worldwide is probably a big underestimation.

"The diagnosis of multiple sclerosis is very difficult," he said. "You really need neurologists who have the knowledge to distinguish it from other things."

It also needs specialist equipment which poorer health systems simply cannot access. MRI scanners, for example, are in short supply in the developing world.

"There must be many people out there who we just don't know about," said Mr Baneke.

Stigma

The survey also looks at the experiences of people with MS. In many countries, they face stigma and misunderstanding.

Kanya Puspokusumo, a 36-year-old Indonesian, was diagnosed in 2001.

She said that some people thought MS was similar to Aids. Even though she explained it was not transmitted from one person to another, many still excluded her socially.

Dr Hithaishi Weerakoon is a doctor in Sri Lanka who was diagnosed with MS more than a decade ago.

Many families do not acknowledge MS, she says, and keep affected family members hidden away.

Others say, wrongly, that it has developed as a condition because of sins in a past life.

Those associated with the study say this is an important start - but that far more research needs to be done, especially in developing countries where the process of identifying cases systematically and collecting data is still at a very early stage.