Page last updated at 08:35 GMT, Thursday, 18 September 2008 09:35 UK

Worldwide survey seeks MS answers

By Jill McGivering
BBC News

Woman
Women are twice as likely as men to develop MS

The number of people suffering from the neurological disease multiple sclerosis (MS) worldwide could be far more than the estimated 1.3m, researchers say.

A major new study into the disease has been launched by the Multiple Sclerosis International Federation (MSIF) and the World Health Organization (WHO).

They hope to answer key questions about MS, the cause of which is unclear.

Governments are being urged 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.

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

But there are still many mysteries surrounding MS.

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

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.

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, sufferers 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.

Map




SEE ALSO
Unproven treatment 'aids my MS'
17 Sep 08 |  Health
Stem cells 'halt nerve disease'
04 Jun 08 |  Health
Multiple sclerosis
05 Jun 06 |  Medical notes

RELATED INTERNET LINKS
The BBC is not responsible for the content of external internet sites


FEATURES, VIEWS, ANALYSIS
Has China's housing bubble burst?
How the world's oldest clove tree defied an empire
Why Royal Ballet principal Sergei Polunin quit

BBC navigation

BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.

Americas Africa Europe Middle East South Asia Asia Pacific