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.
In this episode, Dayna speaks with Tom, who shares his honest and deeply personal experience of living with a rare form of dystonia called ProGene dyskinesia. Diagnosed at 18 after years of misdiagnoses and uncertainty, Tom reflects on the journey to getting answers, the daily reality of managing 10 to 20 spasms a day, and the emotional weight that comes with explaining a little-known condition to those who don’t understand it. Through humour, openness and clear-eyed insight, Tom brings listeners into his world, sharing the highs and lows with compassion and clarity.
Together, Tom and Dayna explore the impact of dystonia not just on the body, but on relationships, mental health, and identity. From the challenge of navigating the healthcare system to the freedom he finds in fitness and routine, Tom offers a powerful message about self-acceptance, resilience, and the importance of community. Whether you’re living with dystonia, supporting someone who is, or simply want to understand more about this condition, this conversation is a generous and important listen.
24 Oct 2025
Dystonia Matters: Josh-Jayys Story
In this episode of the Dystonia Matters podcast, Dayna is joined by Josh -Jayy who shares the emotional and impactful story of his mum’s journey living with neck (cervical) dystonia.
Through Josh-Jayy's eyes, we hear how the condition has affected not just his mum’s life but the family’s experience as a whole.
From recognising the first signs to dealing with diagnosis delays and the challenges of treatment, Josh-Jayy gives an honest account of supporting a loved one with a little-known neurological disorder. He offers valuable insights into the daily realities of life with dystonia, including the social stigma, invisible symptoms, and the importance of family and community support. His reflections are heartfelt and thoughtful, capturing the complexity of being a carer and an advocate.
The episode highlights the power of sharing stories to raise awareness and create a more compassionate understanding of life with dystonia.
10 Apr 2025
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 (https://www.dystonia.org.uk/Handlers/Download.ashx?IDMF=15146ba9-b074-4311-928c-5c9a3596547c).
If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: communications@dystonia.org.uk (mailto:communications@dystonia.org.uk)
Visit www.dystonia.org.uk (https://www.dystonia.org.uk/) for further information and details on becoming a Dystonia UK member.
Email: communications@dystonia.org.uk (mailto:communications@dystonia.org.uk) 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.
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
1 ratings
Spotify
5.0 / 5
4 ratings
Podcast Authority Score: 31 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
34
Social presence
0
YouTube
0
Engagement
68
Host of Dystonia Matters Podcast?
Claim your podcast to manage its listing and keep your show details accurate.
Pod Engine is an independent podcast discovery and analytics service and is not affiliated with or endorsed by this podcast. Artwork and show content belong to their owners. Full legal notice.
Explore this show Podcast research with Pod Engine
