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World recognises neurological disease, multiple system atrophy (MSA)

For immediate release: Friday 3 October 2014

The lights of the UK’s landmark tourist attraction, the Blackpool Tower, go orange today (3/10) to mark World MSA Awareness Day.

Around 3,000 people in the UK have multiple system atrophy (MSA) – the same number of visitors to the Blackpool Tower on its opening day in 1894.  Globally, for every 100,000 people, five will have MSA.

The UK-based charity, Multiple System Atrophy Trust (MSA Trust), has launched a film* to raise awareness about the condition.

MSA is a rare neurodegenerative disease leading to premature death. Some people with MSA say it feels like the disease traps them in their own bodies. There is no known cause or cure for MSA, which strikes at random, usually when people are in their mid to late 50s. The latter stages of MSA are extremely challenging and people often need around the clock care.  Difficulties with swallowing, speech and movement are some of the symptoms many experience.

The Chair of the MSA Trust, Professor Clare Fowler, worked for many years at the National Hospital for Neurology and Neurosurgery in London and treated people with MSA, said:

“Having a rare disease like MSA often causes loneliness and isolation as very few people, including health professionals, have heard of it. It is also very complex and can take several years to diagnose.

“It is extremely difficult for people who have the disease as, even once they get a confirmed diagnosis, poor understanding and general lack of awareness of it means they often have to try and educate family, friends and, sometimes, even clinicians. More awareness will help tackle this, and will go some way to easing a very difficult journey for people affected by this dreadful disease.”

The MSA Trust is the UK’s main source of support for people with multiple system atrophy (MSA), their families and carers. The Trust provides the services of specialist nurses, a support group network, an email and telephone advice service and it funds vital research to find the cause, and one day cure, for MSA. The MSA Trust is a charity funded entirely by voluntary donations.

―   ENDS   ―

Notes for editors:

*The film was produced by the Media Trust.

Contact:

Franca Tranza (MSA Trust): 0207, 940 4666, 07718 426076, franca.tranza@msatrust.org.uk


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