Dystonia

Cervical dystonia, blepharospasm, generalised dystonia, focal dystonia, dopa-responsive dystonia, myoclonic dystonia, paroxysmal dystonia, tardive dystonia, functional dystonia, oromandibular dystonia, spasmodic torticollis, Meige syndrome, hemidystonia, spasmodic dysphonia

What is dystonia?

Dystonia is a neurological movement disorder that presents with uncontrollable muscle spasms, which can be painful. There are many different types and forms of dystonia.

What causes dystonia?

Dystonia is triggered by incorrect signals from the brain.

These may be caused by genetics, a brain injury, a drug reaction or as a symptom of another condition but in some cases, there is no known or clear cause.

Dystonia is a lifelong condition, affecting both adults and children. There is currently no cure, but there are lots of different treatments that can help reduce the symptoms of dystonia.

What are the symptoms of dystonia?

Dystonia can affect any region of the body. The symptoms can vary a lot between the different types of dystonia.

Common symptoms of dystonia may include:

  • Uncontrolled muscle cramps and spasms
  • Body parts twisting into unusual positions
  • Shaking (tremor)
  • Uncontrolled blinking
  • Vision loss
  • A breathy or strangled-sounding voice
  • Slurred speech
  • Hand cramps

Are you affected by dystonia?

If you’re affected by dystonia, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with dystonia, emotional support such as counselling, phone befriending and group therapy and social activities to people with dystonia from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with dystonia

We support carers, friends and family too

Are you a carer for or relative of someone with dystonia? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including dystonia, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Carer support from The Brain Charity in Liverpool Practical help

Support for carers

All The Brain Charity's services are free for carers and family members of people with neurological conditions too.
Get help
Craft workshop at The Brain Charity Social activities

Social activities, workshops and classes

Make friends, try a new hobby or get fit in a safe, welcoming, non-judgmental space.
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Other resources

The Brain Charity's library

The Brain Charity's public library has free books and leaflets on Parkinson's and a wide range of other disability-related and neurological topics.

Visit our library to read:

The Dystonias by C.D. Marsden

Dystonia Explained from the Dystonia Society

Questions and Answers about Dystonia

or search the catalogue online here.

Support groups

Dystonia UK

Dystonia UK runs more than 70 local and online support groups. Find more information here.

Support groups at The Brain Charity

Are you interested in setting up a dystonia support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Dystonia UK Manchester

Support group that provides those who are affected by dystonia with the opportunity to listen to a speaker on dystonia or a subject relating to general health and wellbeing. They meet two times a year at a central Manchester venue.
Website: www.dystonia.org.uk/manchester
Phone: 08458997131
Email: info@dystonia.org.uk

Other charities

Dystonia UK

Dystonia UK aims to support those who are affected by the condition and to raise awareness across the UK and worldwide.
Website: www.dystonia.org.uk
Phone: 020 7793 36351
Email: info@dystonia.org.uk

The National Institute of Conductive Education (NICE)

Provides services and training in order to help those affected by movement disorders.
Website: conductive-education.org.uk
Phone: 0121 449 1569
Email: foundation@conductive-education.org.uk