Dystonia: Isolated Through Ignorance

Main Category: Neurology / Neuroscience
Article Date: 25 May 2009 - 3:00 PDT

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A survey among Britain's 40,000 sufferers from dystonia - a serious neurological movement disorder causing painful muscle spasms - has shown a widespread ignorance about their condition among healthcare professionals and a lack of understanding amongst the public.

The Dystonia Society has revealed that 74% of members who responded were either 'very worried' or 'concerned' by the lack of awareness amongst medics. "The next area of concern among our members (64%) was an alarming lack of understanding shown by the general public," said Philip Eckstein, Chief Executive of the Dystonia Society.

"It's is shocking that a condition that affects so many people can be so little understood and poorly recognised by healthcare professionals on the frontline. This combined with the lack of understanding amongst the public only exacerbates the pain and difficulties of living with dystonia. People are left to struggle for years, often without even a diagnosis. And when it has been diagnosed, they can rarely find a medical professional who is well-informed about the condition. As for treatment - which consists of injections of botulinum toxin to counter painful muscle spasms - it is patchy across the whole country."

Labour MP and former Minister for Disabled People, the Rt Hon Anne McGuire, has today agreed to table an adjournment debate in Parliament as a matter of urgency in order to seek a response from the Department of Health as to how this movement disorder can be better addressed by the medical service, especially in the 'front line service' of primary care.

Lord Macdonald of Tradeston, a patron of the Dystonia Society, said: "It is gratifying to see that awareness amongst general medical professionals has clearly grown significantly over the past decade. However for those suffering spasms of pain due to their dystonia, any delay in diagnosis and treatment is an ordeal. Members of the Society will be very heartened to know that the prospect of an Adjournment Debate and new engagement with the heath providers will improve the position for the 40,000 with dystonia".

Dr Tom Warner, Royal Free Hospital and Medical Adviser to the Dystonia Society, said: "Dystonia is a common neurological movement disorder and yet it is often unrecognised by healthcare professionals as well as the general public. The involuntary muscle spasms can be very debilitating, painful as well as embarrassing and stigmatising. For these reasons it can have a very negative effect on the quality of life of an individual. In one recent study of 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".

Although there is no cure for dystonia, many dystonic conditions can be successfully managed with the right treatment. Botulinum toxin injections, commonly known as BOTOX(R) or Dysport(R), provide an effective treatment in 75% cases of focal dystonia.

Anyone requiring further information on this condition should contact the Dystonia Society Helpline Support Service on 0845-458-6322 or website http://www.dystonia.org.uk

About Dystonia

Dystonia is a neurological movement disorder characterised by involuntary and sustained muscle spasms. It is estimated that there are up to 40,000 people in the UK affected by the condition.

There are two main types of dystonia: 'generalised dystonia' which affects many parts of the body including the legs, torso and head, and 'focal' dystonias that affects only one part of the body. Common focal dystonia's include the neck (cervical dystonia), eyes (blepharospasm or chronic blinking), hands (writer's cramp), among others. Dystonia can affect people of all ages, although focal dystonias tend to onset in middle age.

Source
The Dystonia Society

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