A Rare Disease Changed Everything: One Husband’s Story of Love, Loss and Relentless Hope

Huntington’s disease affects thousands of families across the UK — but many still haven’t heard of it. And when it comes to men’s health, taboo and time can be two of the biggest barriers to care.

Dr. Hilary sits down with two very different guests sharing one goal: better health through awareness, support, and accessible solutions. First, Steve Lewis, filmmaker and devoted husband, opens up about caring for his wife Sarah and raising awareness about Huntington’s through their powerful story. Then, digital health pioneer Sokratis Papafloratos discusses his personal health scare and how it inspired the creation NUMAN, an online health platform revolutionizing how men (and now women) access care.

Together, they explore:
• What it’s really like living with Huntington’s disease
• How genetic testing impacts family planning
• The emotional toll on carers — and what support’s out there
• Pre-implantation genetic diagnosis: giving children a future without Huntington’s
• Why many GPs have never seen a case — and why that must change
• Making health care more accessible and less embarrassing for men
• How NUMAN is addressing healthcare with holistic plans

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For more information about the show, visit drhilaryjones.com

⏰ Timestamps
01:57 – Steve and Sarah’s story: living with Huntington’s
04:43 – Medication side effects, weight loss, and swallowing problems
06:52 – Genetic risks for children and IVF options
10:55 – Why Steve made a video to demand better care
13:07 – 8,000 diagnosed, 32,000 at risk: the fight for Huntington’s Disease awareness
18:33 – Meet Sokratis: the health scare that started NUMAN
21:00 – Breaking stigma: why men avoid doctors
34:56 – Low testosterone: symptoms, diagnosis, and treatment
42:10 – The future of healthcare: digital, personal, and scalable