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by The Dystonia Society category: Charity
Help us raise awareness of dystonia by registering for our Thunderclap this Awareness Week. By doing so you could help to reduce diagnosis delays for people living with dystonia.
There is currently very little awareness of dystonia amongst the general public and many medical professionals. We're trying to change this.
Dystonia is an incurable neurological condition that affects around 70,000 people in the UK. The condition causes involuntary muscle spasms that force the body into disabling and often painful movements and postures.
Dystonia can affect muscles in almost any part of the body, resulting in symptoms such as functional blindness, severe twisting of the neck and debilitating contortion of the hands. The condition can sometimes spread throughout the body causing major disability. Dystonia affects men, women and children, and can appear at any point in a person's life.
"There's so little awareness of dystonia it has been hard. There's been lots of tears and anger and our family has been under a huge strain - it's shown in all of us - but having a diagnosis has meant we can move on."
Lack of awareness means long delays in diagnosis, with the average time it takes to be diagnosed taking almost 3 years. This is a frustrating and painful wait, with many people being told their symptoms are all in their mind.
Help us raise awareness to stop the delay by sharing our message.
The Dystonia Society
The Dystonia Society is a small charitable organisation, set up by a group of people who were affected by dystonia. It has been running for more than 30 years and has a core aim to promote the welfare of people affected by any form of Dystonia. This is achieved in three ways: promoting awareness of the disorder, supporting research and undertaking welfare initiatives on a local and national level.
Currently we are the only national charity supporting people with dystonia, and we have been able to make significant progress in the support and information available for people with the condition through our National Helpline, Advocacy Service and various events, such as our Living with Dystonia days, and online forum. We are also making progress in improving access to treatment through the development of our website which helps individuals by signposting symptoms during the onset of dystonia.