Dayna is joined by Josh-Jayy who shares his mum’s journey living with neck dystonia.

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View the transcript of Josh-Jayy's story here.

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About the episode

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.

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