http://www.mssociety.org.uk/news_events/news/press_releases/striking_back.html

3rd February 2003

It can strike like lightning. One day you're fine, the next you can't see properly or your leg gives way from under you. Multiple sclerosis strikes at random, usually in the prime of life. It is the most common potentially disabling neurological disease affecting young people in the western world. Around 50 are diagnosed in the UK every week.

'Striking back' is the theme the Multiple Sclerosis Society has chosen for its 50th anniversary year, which includes MS Week from 6 to 13 April 2003. The Society is the UK's largest organisation for people affected by MS and a leading funder of research into its cause and cure.

Says chief executive, Mike O'Donovan, "Like a lightning bolt from the blue, MS is totally unpredictable. You just don't know how it's going to hit you. Some people hardly notice they have it. Some have serious problems with sight, mobility, co-ordination, continence, pain and fatigue which come and go. Others quickly become severely disabled.

"We want to reach out to more people affected by MS than ever before and show them the many ways we can offer support. At the same time we want everyone to understand just what it's like to live with MS and ask them to help us to improve and extend the range of services we can offer."

Mr O’Donovan highlighted a number of current Society activities and initiatives:

• More than 50 specialist MS nurse posts established and funding now extended to stimulate and develop more MS multi-disciplinary health and social care teams

• Nearly 70 research projects, including five clinical trials, being funded in UK centres including the MS MRI unit at the National Hospital and the MS Tissue Bank; current commitment of more than £11 million

• Evidence-based standards of care developed with the National Hospital for Neurology; now working with the National Institute for Clinical Excellence on clinical guidelines for MS due to be published in June 2003

• People with MS conducting self-management and employment training courses

• Continuing investment in Society respite care centres and the first MS respite care and holiday directory published

• MS Society freephone helpline 0808 800 8000 handling over 15,000 calls a year, taken by trained counsellors, may of whom have MS

• Society website www.mssociety.org.uk  voted British Medical Association Patient Information Website 2002

• ‘Just diagnosed’ booklet among an expanding range of publications and fact sheets for people affected by MS and health professionals

• Research with other organisations into the effectiveness of physiotherapy in MS

• Campaigning for equal access to high standards of health and social care including delivery of the Government’s ‘risk-sharing’ scheme for disease-modifying drugs

• Minimum standard of support for local people with MS being introduced across the Society’s 370 strong voluntarily-run branch network

The Multiple Sclerosis Society of Great Britain and Northern Ireland was founded in 1953 by Richard (later Sir Richard) Cave, whose wife, Mary, had MS.  This followed an approach from Sylvia Lawry, who founded the world’s first MS Society in the United States.  The inaugural meeting was at the Chenil Galleries in King’s Road, Chelsea on 2 December 1953.

MS Birthday Cake Break Day is Friday 11 April 2003.

On Saturday 26 April 2003 Simon Cave (65), son of the founder, will set out on a sponsored ‘one million steps for MS’ walk from the Forth Bridge in Scotland to Tower Bridge in London.

Donations to the Society can be made by post to: MS Society. MS National Centre, 372 Edgware Road, London NW2 6ND or via the website http://www.mssociety.org.uk  The website also carries information about fundraising events and volunteering.

Ten Quick Facts about MS
 

• An estimated 2,500,000 people in the world have multiple sclerosis - including 85,000 in the UK - it is more common in countries further away from the equator

• MS is the most common potentially disabling disease of the central nervous system affecting young adults in the Western world

• Every week around 50 people in the UK are diagnosed with MS

• Diagnosis is usually between 20 and 40 years of age - rarely under 12 or over 55

• Three women have MS for every two men

• Prognosis is uncertain – ranging from benign through ‘coming and going’ to severely disabling

• Common symptoms include pain, deadening fatigue, problems with sight, mobility and co-ordination

• MS is not hereditary – but there is a slightly higher chance of getting it if a relative has it – and it is not contagious

• There is no cure for MS but there are now drugs which can modify its course for some people and many symptoms can be successfully treated or managed

• MRI (magnetic resonance imaging) is giving neurologists better understanding of MS, helping diagnosis and research into treatments

© 2003, Multiple Sclerosis Society