Dystonia Matters Podcast
Dystonia Matters Podcast
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.
Dystonia Matters: Karen's story
In our first episode of season five, Karen sits down with Dayna to share her story with warmth and humour. She talks about her journey living with dystonia, from being born with the condition due to a possible birth injury and facing a long road to diagnosis in her 30s, to breaking down barriers in her career after receiving her diagnosis. View the transcript of Karen's story here.If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠⁠⁠[email protected]⁠⁠⁠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 have for future episodes.This show is brought to you by Dystonia UK.Follow us on X, Facebook, LinkedIn, Instagram and TikTok @DystoniaUK.Hosted by: Dayna Ferdinandi, Director of Fundraising and CommunicationsPost Production: Heather Pownall of Heather’s Media Hub Ltd.
Apr 10, 2025
42 min
Dystonia Matters: Lola's Story
After hearing about Lola's brilliant football stadium fundraiser, Dayna couldn't wait to chat to her for the last episode of season four. Lola talks about her grandad's experiences of living with dystonia and how this has affected her, as well as the difficulties of going out and about in society when living with dystonia and her determination to raise awareness about the condition to help her grandad and others like him. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠⁠⁠[email protected]⁠⁠⁠ 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, LinkedIn, Instagram and TikTok @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.  
Dec 23, 2024
48 min
Dystonia Matters: Emma's Story
After hearing about Emma's high flying plans to do a wing walk in aid of Dystonia UK, Dayna was so excited to sit down with her on the podcast. Tune in to hear about Emma's experiences with medication and alternative therapies (including infamous cold dunks!!), the challenges of trying to get people to understand dystonia, and her dream to help others living with the condition. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠⁠[email protected]⁠⁠ 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, LinkedIn, Instagram and TikTok @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.  
Nov 28, 2024
44 min
Dystonia Matters: Mark's Story
Having met Mark at many Dystonia UK events, Dayna could't wait to have him on the podcast. Tune in to hear about Mark's experiences with his local group and how he came to educate Nicky Campbell on dystonia and how much he loves Sara (without an H) all live on national radio. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠[email protected]⁠ 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, Linkedin and Instagram @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.
Jun 28, 2024
33 min
Dystonia Matters: Jason's Story
After a few months of trying to get together Dayna and Jason finally got to sit down and record the podcast. Jason reflects on the challenges of living with a chronic condition and how he is finding hope through alternative treatment solutions. By speaking with Dayna, Jason also experiences a transformative breakthrough towards his attitude to dystonia. Not to mention his amazing fundraising experience and how he is eager to learn more about our amazing community. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠[email protected]⁠ 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, Linkedin and Instagram @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.
May 31, 2024
49 min
Dystonia Matters: Hayley's story
Parents Emma and Gareth share the story of their incredible eight-year-old daughter, Hayley, who has become the first in the world to undergo a new form of advanced deep brain stimulation. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠⁠[email protected]⁠⁠ 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, Linkedin and Instagram @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.
Apr 19, 2024
46 min
Dystonia Matters: Rebecca's story
For the first episode of Season Four, Dayna is joined by the wonderful Rebecca! Rebecca discusses her life's unexpected shift from an active student midwife to life full-time in a wheelchair. Amidst this transition, she created a new path as an accomplished author, creating a range of children’s books and young adult titles. She also opens up about the heartfelt encounter that led to meeting her husband and offers insights into the perspective her children hold of her. In October 2023, Rebecca released a poetry collection, 'Freefall Dysfunctionally Me', with all royalties from the collection being donated to Dystonia UK.   Tune in to explore Rebecca's extraordinary story of resilience and perseverance. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: [email protected] 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 have for future episodes. This show is brought to you by Dystonia UK. Follow us on X, Facebook, Linkedin and Instagram @DystoniaUK. Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications Post Production: Heather Pownall of Heather’s Media Hub Ltd.  
Mar 28, 2024
52 min
Dystonia Matters: Claire's story
In our latest episode we were joined by the super talented Paralympic Boccia champion - Claire Taggart.Hear Claire talk about inclusion in sport and how she's using her voice to raise awareness of dystonia. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: [email protected] 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
Dec 15, 2023
50 min
Dystonia Matters: Katie's Story
In this episode Katie joins Dayna to chat about having an incredibly busy home life! How dystonia has changed her life beyond measure affecting her confidence and friendship groups, Life in a wheelchair, meeting people with the condition for the 1st time at Dystonia Matters Live 2023 and how much of a relief that was and how she is taking control of her future. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: [email protected] 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
Sep 25, 2023
1 hr 1 min
Dystonia Matters: Beccy's Story
In episode 2 of the 3rd season of the podcast, Dayna is joined by the fabulous Beccy! Beccy who has been diagnosed with hemi-dystonia, has run marathons, been a torch bearer for the 2012 London Olympics and opens up with a brave vulnerability & unflinching honesty about her life. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: [email protected] 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
Jun 2, 2023
53 min
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