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  • Frequently asked questions
  1. Help and support
  2. Frequently asked questions

Frequently asked questions

Whether you've been recently diagnosed or been living with dystonia for a number of years, it's normal to have questions.

We've put together some of our most frequently asked questions to help navigate the journey. If you can't find the answer you are looking for, you can always get in touch, and we will do our very best to help you.

Diagnosis and symptoms FAQs

Diagnosis and symptoms FAQs

Find answers to frequently asked questions related to what to do if you think you have dystonia and how to get a diagnosis. Read more

Published: 26th August, 2020

Updated: 12th July, 2021

Author: Bernie McMahon

Fundraising and volunteering FAQs

Fundraising and volunteering FAQs

Find answers to frequently asked questions related to the various ways you can support Dystonia UK including fundraising and volunteering. Read more

Published: 9th June, 2021

Updated: 7th November, 2025

Author: Bernie McMahon

Get in touch FAQs

Get in touch FAQs

Find answers to frequently asked questions related to how to connect with us directly to ask a question, offer feedback and more. Read more

Published: 9th June, 2021

Updated: 12th July, 2021

Author: Bernie McMahon

Help and support FAQs

Help and support FAQs

Find answers to frequently asked questions related to how Dystonia UK, and other organisations, can support you to understand dystonia and connect with others with the condition. Read more

Published: 9th June, 2021

Updated: 12th July, 2021

Author: Bernie McMahon

Living with dystonia FAQs

Living with dystonia FAQs

Find answers to frequently asked questions related to living with dystonia from benefits to how dystonia affects daily activities like driving. Read more

Published: 9th June, 2021

Updated: 19th January, 2026

Author: Bernie McMahon

Membership and donations FAQs

Membership and donations FAQs

Find answers to frequently asked questions related to supporting us through joining Team Dystonia UK as a member and making a donation. Read more

Published: 2nd September, 2020

Updated: 12th July, 2021

Author: Bernie McMahon

Research FAQs

Research FAQs

Find answers to frequently asked questions related to the global research effort to discover more about dystonia and how Dystonia UK supports it. Read more

Published: 9th June, 2021

Updated: 3rd December, 2025

Author: Bernie McMahon

Shop FAQs

Shop FAQs

Find answers to frequently asked questions related to our website shop and our range of Dystonia UK branded merchandise. Read more

Published: 28th June, 2021

Updated: 12th July, 2021

Author: Bernie McMahon

The other FAQs

The other FAQs

Find answers to frequently asked questions related to all the other bits and bobs at Dystonia UK. Read more

Published: 9th June, 2021

Updated: 12th July, 2021

Author: Bernie McMahon

Treatment FAQs

Treatment FAQs

Find answers to frequently asked questions related to the various treatments for dystonia and how to find a hospital or clinic that will treat dystonia. Read more

Published: 26th August, 2020

Updated: 12th July, 2021

Author: Bernie McMahon

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Latest

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Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological condition that is estimated to affect at least 100,000 people in the UK. Learn more about it here.

  • What are the symptoms?

  • What causes dystonia?

    What causes dystonia?

    The cause of dystonia is not yet fully understood, in some cases at least it can be attributed to a chemical imbalance in the part of the brain called the basal ganglia, a part which helps to control movement.

  • What are the symptoms?

  • What are the symptoms?

  • What are the common treatments?

  • What are the causes?

  • What are the common treatments?

  • What are the causes?

  • Who does it affect?

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Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)

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