In 2020, Dystonia UK launched the Dystonia Matters podcast as a powerful platform to give our community a voice. The podcast series allows us to share the stories of people living with dystonia, whether they’ve been diagnosed themselves, or care for someone with the condition. Our hope is that through telling the tales of our community we can help people living with dystonia know they are not alone and raise awareness.
“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?’
With each episode, guests sit down with Dystonia UK’s Director of Fundraising and Communications, Dayna Ferdinandi, to have an honest conversation about their unique experiences navigating life with dystonia. What makes this podcast so special is the blend of authenticity and lightness of the conversations which not only educates, but also provides a sense of solace and connection for those also affected tuning in.
No matter the guest, whether it’s the remarkable rising social media star and Dystonia UK ambassador Ella Middleton (Season 2 Episode 1), Dystonia UK fundraisers (Season 1 Episode 4) or Claire Taggart, a boccia Paralympic champion (Season 3 Episode 4), one thing is for certain: you’ll come away from each episode with a renewed sense of empathy, and a heartfelt connection to the resilience of the dystonia community.
In 2020, Dystonia UK launched the Dystonia Matters podcast as a powerful platform to give our community a voice.
“Everything I’d imagined for myself had been taken away. And no one had said it gets better. And I feel like because no one had that conversation or even said you’re allowed to imagine it getting better, I think I’d allowed that fear to completely take over.”
Rebecca
The podcast naturally covers a broad spectrum of important topics. Many episodes feature guests who share their personal journey to diagnosis and explain their experiences within the healthcare system. In some episodes we delve into specific and nuanced aspects of life with dystonia, such as the unique challenges faced by parents raising children with the condition. These discussions shed light on the emotional, practical, and medical considerations, as well as exploring the intricacies of young adults’ experiences with dystonia, covering topics such as managing school life, social interactions, and fostering independence. Additionally, we’ve had conversations with individuals navigating the complexities of working, keeping active and managing their mental health all while living with dystonia.
Dystonia UK strives to create a podcast that speaks to the experiences of everyone within our community. Our aim is to provide a platform where every listener can find validation and solidarity, fostering a sense of belonging and empowerment as they navigate their own dystonia journey.
“… dystonia matters, because we matter as people, and we are all inspirational people that have a voice, and our voices deserve to be known.” Ella Middleton
Tune in to hear the true stories of our remarkable guests. Available on the Dystonia UK website www.bit.ly/DystoniaMattersPodcastDE and all major streaming platforms.
Dystonia UK
