Dystonia Awareness Week: 5th-13th May

May 8, 2012 5:30 pm

“Dystonia is a movement disorder which causes involuntary contractions of your muscles. These contractions result in twisting and repetitive movements. Sometimes they are painful.

Dystonia can affect just one muscle, a group of muscles or all of your muscles. Symptoms can include tremors, voice problems or a dragging foot. Symptoms often start in childhood. They can also start in the late teens or early adulthood. Some cases worsen over time. Others are mild.

Some people inherit dystonia. Others have it because of another disease. Either way, researchers think that a problem in the part of the brain that handles messages about muscle contractions might cause dystonia. There is no cure. Instead, doctors use medicines, surgery, physical therapy and other treatments to reduce or eliminate muscle spasms and pain.”

National Institute of Neurological Disorders and Stroke

 

Awareness Week is here! From 5th – 13th May, The Dystonia Society are looking for you to raise awareness of Dystonia in any way you can! It’s important to share as much information as possible so that people are aware of Dystonia. Currently, there is very little information on the Dystonia Society in clinics and treatment centres. The Dystonia Society are looking for people who could help raise awareness by delivering posters and leaflets to their local clinic or treatment centre. Please fill out the enquiry form if you can help: http://www.dystonia.org.uk/index.php/awareness-raising-in-clinics

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK (of whom 8,000 are children).

Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Unfortunately there is not yet a cure. However, in the vast majority of cases, dystonia does not impact intelligence or shorten a person’s life span.

Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations. Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.

 

  • 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
  • Ways 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

 

Who is affected by dystonia?

Dystonia affects men, women and children of all ages.

If dystonia develops in childhood, it tends to become generalised. Dystonia which has its onset in adult life usually remains focal and is more common in those over 40 years of age. Dystonia can be difficult to diagnose and many patients remain untreated because their symptoms are unrecognised. It is thought that there are more than 70,000 people with dystonia in the UK.

 

Why have I never heard of dystonia?

Even though dystonia is estimated to be about ten times more common than motor neurone disease, and the third most common neurological disorder, many people have never heard of it.

Until recently, many GP’s were unfamiliar with dystonia. In the last few years, medical awareness of dystonia has increased greatly and the outlook for people with dystonia is improving. The Dystonia Society, a registered charity, devotes much time and many resources to fund research and promote awareness among medical professionals and public alike.

 

What should I do if I think I have dystonia?

If you think you may have dystonia and it has not yet been diagnosed, you should see your doctor and ask to be referred to a neurologist specialising in movement disorders.

If you are diagnosed as having blepharospasm, you may be treated by an ophthalmologist. If you have laryngeal dystonia, you may see an ear, nose and throat (ENT) specialist.

During your consultation with the appropriate specialist, you will undergo an examination and you will also be asked many questions to establish if there is any family history of neurological problems and muscle spasms.

The specialist will evaluate of the nature of the symptoms you present with, including.

  • Age at symptom onset
  • Body areas affected
  • Progression of symptoms

Following the examination, the specialist will discuss their findings with you and treatment options.

 

If you think you have Dystonia or know someone who has it, please contact The Dystonia Society:

HELPLINE: 0845 458 6322

WEBSITE: www.dystonia.org.uk

FACEBOOK: Dystonia Society UK   www.facebook.com/dystoniasociety

TWITTER: @DystoniaSociety

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  • Amy

    It’s true, you really do learn something new every day – I’d heard of dystonia, but couldn’t have told you anything about it. Thanks for writing this informative piece.

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