Dystonia Matters Podcast

By DystoniaUK

Dystonia UK, the only national charity supporting people with dystonia is delighted to bring you the Dystonia Matters Podcast! Sharing personal stories and talking to members of the dystonia community... more

· Health & Fitness

5

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FAQs about Dystonia Matters Podcast:

How many episodes does Dystonia Matters Podcast have?

The podcast currently has 23 episodes available.

Dystonia Matters Podcast episodes:

April 03, 2023 Dystonia Matters: Tajana's story
For the first episode of Season Three, Dayna chats with Tajana about her dystonia story; from her experiences having deep brain stimulation (DBS) as a child and what that was like at school and the hospital, to some of her employment highs and lows, to talking about awareness.
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
59min
December 16, 2022 Dystonia Matters: Luca's story
In this episode of the Dystonia Matters podcast, Dayna and Luca got to sit down and have a chat about how it was growing up with dystonia, having deep brain stimulation surgery, and what it is like now being 15, taking exams and having a long term condition. We have watched Luca grow up and have heard his story through his mum's eyes. It was a pleasure to hear it in his own words and see how much raising awareness means to him.
Please note the sound quality in some parts of the recording are not perfect.

Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
37min
October 07, 2022 Dystonia Matters: Kimberley's story
Dystonia Superstar Award winner, Kimberley, stopped by the podcast to chat to Dayna about her dystonia story.
They talked about about Kimberley's surprise at winning one of the Dystonia UK awards after a nomination from her mum (which she forgot doing!), her journey to getting a diagnosis, meeting her husband and becoming a mum.
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
50min
September 23, 2022 Dystonia Matters: Ryan and Gemma share Bailey's story
In this episode of the Dystonia Matters Podcast we are joined by Ryan and Gemma, parents to Bailey who is 15 and has dystonia.

They share with us their struggle to diagnosis, how his dystonia has affected Bailey and the whole family, and why after spending so much time in hospitals with Bailey in crisis, they decided DBS (Deep Brain Stimulation) was the only option for them.

Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
51min
September 16, 2022 Dystonia Matters: Danni's story
In this episode of the Dystonia Matters Podcast we are joined by Danni to share her story.

Danni is 22 years old and recently found out she has generalised myoclonus dystonia after being diagnosed with cerebral palsy for almost her entire life. We talk about her search to be comfortable within her own identity and how she is finding being part of the dystonia community.

Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
41min
September 09, 2022 Dystonia Matters: Joe's story
In this episode of the Dystonia Matters Podcast we are joined by Joe to share his story.
Joe is 31 years old and has generalised dystonia. We talk about his experiences with deep brain stimulation (DBS), how he found growing up with the condition, and how he has come to be a published author.
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd

...more
34min
September 02, 2022 Dystonia Matters: Ella's story
For the launch of season two of the podcast we are joined by Ella to share her story.
Ella is 24 years old and a rising social media star with over 1.2 million followers on TikTok. As a child she was diagnosed with fixed functional dystonia following a horse riding accident.
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
53min
April 14, 2022 Dystonia Matters Episode Six: Dystonia and mental health
In this episode we are joined by Lucy and Dylan to discuss dystonia and mental health.
Lucy and Dylan joined us to discuss their mental health and how it feeds into their dystonia and how in turn dystonia affects their mental health.
Lucy has generalised dystonia. Lucy finds that the problem with dystonia is there can be a vicious cycle where when her dystonia is worse it makes her mental health worse which affects her relationships with other people.
Dylan was diagnosed 8 years ago with idiopathic functional dystonia. His dystonia has led to him being bedbound for periods of time. He says he can have his dark days but he is stubborn and tells himself to get on with it.
Content warning
Due to the sensitive topics we've discussed if you feel like you need help do not delay in reaching out. In an emergency you can call 999 or you can speak to someone at Samaritans 24/7 by calling 116 123.
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member.
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK.
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
42min
September 24, 2021 Dystonia Matters Episode Five: Awareness Raising
In this episode we are joined by four fantastic guests who in very individual ways have been raising awareness of dystonia.
Throughout this podcast our guests shared their personal stories and together we explored the many different ways you can raise awareness. From local support groups to compiling a novel of stories to using social media, we laughed and cried and we are so grateful to them for their honesty and tips.
Our supporters are the best representatives for Dystonia UK, helping to spread awareness in person and all over social media. They are all champions and we are so lucky to have such a great team!
Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd
...more
54min
August 27, 2021 Dystonia Matters Episode Four: 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.
Throughout this podcast we explore the personal stories of our fundraisers who have taken on their own challenges and discovered the many benefits of fundraising. Being spurred on as a way to give back to the charity, help raise awareness of dystonia, and process news of a long awaited diagnosis.
Our fundraisers are the best representatives for Dystonia UK, helping to spread awareness in person and all over social media. They are all champions and we are so lucky to have such a great team!

Contact Information
Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member
Email: [email protected] for any questions or topic suggestions you may have for future episodes.
This show is brought to you by Dystonia UK
Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.
Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications
Post Production: Heather Pownall of Heather's Media Hub Ltd

...more
56min

FAQs about Dystonia Matters Podcast:

How many episodes does Dystonia Matters Podcast have?

The podcast currently has 23 episodes available.