Dystonia Matters Podcast

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.

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.

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: ⁠⁠⁠communications@dystonia.org.uk⁠⁠⁠

Visit ⁠www.dystonia.org.uk⁠  for further information and details on becoming a Dystonia UK member.

Email: ⁠⁠⁠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.

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: ⁠⁠⁠communications@dystonia.org.uk⁠⁠⁠

Visit ⁠www.dystonia.org.uk⁠  for further information and details on becoming a Dystonia UK member.

Email: ⁠⁠⁠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.

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: ⁠⁠communications@dystonia.org.uk⁠⁠

Visit www.dystonia.org.uk  for further information and details on becoming a Dystonia UK member.

Email: ⁠⁠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.