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:
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
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