Beatwise The Podcast
In this episode of Beatwise The Podcast, I speak with Paul Pozzo, a leading patient advocate and former chair of Amyloidosis UK. Paul shares his experience living with wild-type amyloidosis, from the challenges of delayed diagnosis to becoming a powerful voice for patients in research and healthcare advocacy. Diagnosed in 2015 at a time when no disease-modifying drugs were available, Paul was initially treated with standard heart failure therapies before later joining clinical trials that helped stabilize his condition and improve his quality of life. Together, we explore the critical role of patient advocacy in rare diseases, the need for earlier diagnosis, and how research participation is helping transform outcomes for people with amyloidosis. We also discuss the importance of recognising early warning signs, including: * unexplained breathlessness * carpal tunnel syndrome * neuropathy * kidney problems * and the finding of a “thick heart” on cardiac imaging Beyond diagnosis and treatment, the conversation highlights the need for holistic care, including multidisciplinary support, cardiac rehabilitation, and attention to mental wellbeing. Paul also explains how patient organisations like Amyloidosis UK provide vital support through education, community connections, and advocacy, helping patients and families navigate what can often be a complex and isolating diagnosis. This episode is an important reminder that patient voices play a crucial role in shaping research, improving care pathways, and raising awareness of rare cardiac conditions. EPISODE HIGHLIGHTS: 00:00 Welcome to Beatwise 01:01 Paul’s Diagnosis Story 03:32 Living With Limitations 06:24 Why Early Diagnosis Matters 07:36 Red Flags and Patient Voice 09:34 How the Charity Helps 11:09 Research and Clinical Trials 13:46 Symptoms and Hospital Journey 17:05 Reassurance After Diagnosis 21:01 Holistic Care and Rehab 24:11 Call to Action and Charities 30:05 Final Takeaways and Thanks If you enjoyed this episode, please like, rate, and subscribe to Beatwise The Podcast. Your support helps me reach more listeners and continue providing valuable content. Don't forget to follow me on social media @sarah.theheartdoc [https://www.instagram.com/sarah.theheartdoc/] for the latest updates, behind-the-scenes content, and more engaging discussions. Stay connected and be part of our growing community! ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.
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