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Dystonia Matters Podcast

The Dystonia Matters Podcast! Sharing personal stories and talking to members of the dystonia community.

Dystonia Matters Podcast logo

Our podcasts are all about sharing your stories and hearing from the community. We know how important it is to hear other people’s stories and know you are not alone. Podcasts allow us to literally share your voices.

One supporter said, “I've listened to the podcast... and cried. It is wonderful to realise you're not alone and agree that it would be lovely to get to the point where people don't say 'What IS dystonia?'"

Check out released episodes below. Subscribe now on Spotify or Apple Podcasts and all major podcasting platforms.

Dystonia Matters and so does your voice, so if you would like to share your story, please pop us an email and a member of the team will contact you.

Donate £1 to support the dystonia community today


Donate £1 today to support the work of Dystonia UK. Your donations will make such a difference including giving our community the opportunity to share their stories on our Dystonia Matters podcast! We aim to raise £100,000, one pound for every person in the UK thought to be affected by dystonia. 

Episode 1: Faces of the dystonia community

Episode 1: Faces of the dystonia community

In this first episode of the Dystonia Matters podcast, you'll meet three members of the dystonia community, Louise, Katie and Andy. Read more

Published: 31st March, 2021

Updated: 8th December, 2021

Author: Bernie McMahon

Episode 2: Working with dystonia

Episode 2: Working with dystonia

For the second episode of the Dystonia Matters podcast, we're sharing lifestyle advice from Dystonia UK Ambassador, Gemma Stevenson and Nick Morgan. Read more

Published: 31st March, 2021

Updated: 8th December, 2021

Author: Bernie McMahon

Episode 3: Parents and carers

Episode 3: Parents and carers

Parents and carers are an essential part of the dystonia community, so in this episode we're introducing you to three phenomenal parents and their journeys helping their kids navigate their conditions. Read more

Published: 31st March, 2021

Updated: 8th December, 2021

Author: Bernie McMahon

Episode 4: Fundraising brings communities together

Episode 4: Fundraising brings communities together

In this episode we are joined by three of our amazing fundraising champions as they identify the dual purpose of fundraising and awareness raising. Read more

Published: 27th August, 2021

Updated: 8th December, 2021

Author: Bernie McMahon

Episode 5: Awareness raising

Episode 5: Awareness raising

In this episode we are joined by four fantastic guests who in very individual ways have been raising awareness of dystonia. Read more

Published: 24th September, 2021

Updated: 8th December, 2021

Author: Bernie McMahon

Episode 6: Dystonia and mental health

Episode 6: Dystonia and mental health

In this episode we are joined by Lucy and Dylan to discuss their mental health and how it feeds into their dystonia and how in turn dystonia affects their mental health. Read more

Published: 1st April, 2022

Author: Bernie McMahon

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Showing 10 of 6

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    08/06/2022 | On Sunday 29th May, 11 fabulous cyclists from #TeamDystoniaUK took on the prestigious RideLondon.

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    13/05/2022 | On Saturday 7th May five amazing teams took on the super challenging K2B and C2B sponsored walk, completing an incredible 40 and 20 miles!

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Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK.

  • 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 common treatments?

  • What are the symptoms?

  • What are the causes?

  • Who does it affect?

  • What are the symptoms?

  • How will it affect my life?

  • What are the common treatments?

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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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