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The Dystonia Society, the national charity for people affected by dystonia, is marking Dystonia Awareness Week, May 8th to 14th 2005, by launching a helpline number.

Dystonia is a neurological movement disorder that affects an estimated 40,000 people1 in the UK. The Dystonia Society aims to provide people with dystonia, and their families and carers, with advice, emotional support, and practical help with the challenges of living with this long-term condition. The new helpline number is 08450 956575 (local call charge).

Philip Eckstein, CEO of the Dystonia Society said: “To mark this year’s Dystonia Awareness Week, we are launching the first-ever national UK Dystonia Helpline to provide a support and information service for people who have, or who care for, someone with dystonia. It is important for us to raise the profile of dystonia, to improve diagnosis, increase availability to treatments and to provide people with dystonia with a better support network throughout the UK.”

Dystonia is a neurological movement disorder caused by involuntary sustained muscle spasms. These spasms can affect various parts of the body such as the neck, hands, legs, eyes and throat, or can be generalized throughout the body. The abnormal movements and postures caused by Dystonia can be extremely painful and debilitating. There is currently no known cure. Currents treatments include injections of botulinum toxin A into the affected area by a qualified healthcare practitioner, oral medication, and surgery.

The Dystonia Society is also publishing the results of a new nationwide survey of its members to highlight some of the challenges that people face. The survey of 1,736 respondents found that only 27 per cent of people with dystonia had obtained a correct diagnosis within the first year of the appearance of symptoms, with almost half taking over three years to be diagnosed. There is some evidence that this situation is improving with diagnosis in the first year at 32 per cent for the past four years compared with a rate of 28 per cent five-to-ten years ago and a significantly lower rate of 23 per cent more than 10 years previous.

The survey also reported on the impact of dystonia on quality of life. Almost three quarters of respondents said that it had a significant impact on their social life, with half saying their work life suffered and 45 per cent reporting a negative impact on their family lives.

Tom Warner, Dystonia Society - Medical Adviser, said: “Dystonia is a common neurological movement disorder and yet it often is unrecognized by healthcare professionals as well as the general public. The involuntary muscle spasms can be very debilitating, painful as well as embarrassing and stigmatizing. For these reasons it can have a very negative effect on the quality of life of an individual, as shown by this survey. In one recent study people with dystonia, the deleterious effect on quality of life was found to be as severe as that seen in people with Multiple sclerosis and Parkinson’s disease.”

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Case studies and interviews with medical experts are available on request
Contact: Conor Griffin / Clare Evans, Chandler Chicco Agency, Tel: 020 7318 8343 / 8309
Contact: Tom Frangleton, The Dystonia Society, Tel: 020 7490 5671

Notes to editors: The Dystonia Society is a registered charity (Number 1062595) and is located at 46/47 Britton Street, London EC1M 5UJ. Phone: +44 20 7490 5671 / Fax: +44 20 7490 5672. More information can be found at www.dystonia.org.uk

The Dystonia Society Survey was sponsored by an educational grant from Allergan Ltd.

References:
1. http://www.dystonia.org.uk/page3.html/&child=7543. Accessed on April 14th 2005.


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