Awareness Week is here! From 5th - 13th May we are looking for you to raise awareness of Dystonia in any way you can!
If you haven't downloaded and printed our Awareness Week poster yet you can get it from here
If you are running an Awareness Event please let us know and don't forget to get some photos if you can - you can email them to info@dystonia.org.uk or put them on our Facebook for everyone to see!
Media Coverage
It's always great to see members and supporters getting articles on dystonia in their local newspapers, on blogs and getting onto their radio station or even on TV to raise awareness of dystonia. If you can get the message out in this way we have put together a few things below to mention!
In any media coverage please remember to mention the Dystonia Society Helpline and the Website where people can find out more:
HELPLINE: 0845 458 6322
WEBSITE: www.dystonia.org.uk
Dystonia
- Dystonia is a neurological condition where incorrect messages cause the muscles to perform incorrectly
- It can affect many different parts of the body – and causes disabling and often painful postures or movements
- Although little known it is surprisingly widespread affecting 70,000 people in the UK (1 in 900)
- It is often misdiagnosed and treated wrongly. On average people wait 3-4 years for diagnosis, so many people have it without realising what it is
Way to recognise some of the more common forms are:
- Neck dystonia – neck being pulled out of position – twisting sideways or being pulled towards shoulder
- Eye dystonia – uncontrollable blinking or the eyelid clamping shut
- Childhood onset dystonia – twisting or contortion of the limbs
The above are the main points - you could also mention:
- Dystonia is cruel in that the earlier it appears in life the more it tends to spread
- Adult-onset dystonias tend to remain focal to one or possibly two areas of the body – mainly neck and eye but also voice, mouth and hand. Tends to start in mid to late life
- Child-onset dystonia tends to spread and can affect the whole body – but is much rarer
- Main treatment is botulinum toxin which paralyses the misperfoming muscles – provides significant relief for many people
- Treatment of last resort is deep brain stimulation – effectively a pacemaker of the brain. An electrode is implanted in the brain and connected to a battery in the chest by a cable running down the inside of the skull. The battery sends a pulse to the electrodes that blocks that incorrect messages
In any media coverage please remember to mention the Dystonia Society Helpline and the Website where people can find out more:
HELPLINE: 0845 458 6322
WEBSITE: www.dystonia.org.uk
You can also mention:
FACEBOOK: Dystonia Society UK (www.facebook.com/dystoniasociety)
TWITTER: @DystoniaSociety
If you do get any media coverage please let us know!
