77: The Hirschsprung’s Hour with Tom Richard - Episode 7777: The Hirschsprung’s Hour with Tom Richard - Episode 77
UK Health Radio Podcast
Tom Richard talks with Tony Bertoli about growing up with Hirschsprung’s disease, later developing type 1 diabetes and Hashimoto’s, and coping with lactose intolerance and dehydration risks. Tony shares how he still maintains a busy IT career and musical life, offering reassurance to families concerned about long‑term futures with Hirschsprung’s.
44:02•14 Apr 2026
Living with Hirschsprung’s, Diabetes and Hashimoto’s: Tony Bertoli’s Remarkably Normal Life
Episode Overview
- Parental instincts matter: Tony’s mum had to push hard for doctors to take his early Hirschsprung’s symptoms seriously, something many families still experience.
- Structured diets in childhood helped his shortened colon function more predictably, even though meals at relatives’ houses often disrupted that routine.
- Years of blaming Hirschsprung’s for urgent bathroom trips were later traced to undiagnosed, severe lactose intolerance confirmed in adulthood.
- Type 1 diabetes appearing at 27 added strict blood sugar and hydration management to his daily life, with dehydration triggering a serious bowel obstruction.
- Despite multiple conditions, Tony maintains a full-time IT career and a rich musical life, showing that many people with Hirschsprung’s can build active, fulfilling futures.
“I was truly on the brink of not surviving at all because she could not convince somebody to look at me.”
Curious about how others handle rare health conditions and still get on with everyday life? This chat between host Tom Richard and guest Tony Bertoli gives a frank, down‑to‑earth look at living with Hirschsprung’s disease alongside type 1 diabetes, Hashimoto’s and severe lactose intolerance. Tony shares how, as a baby in the late 80s, his mum had to battle a dismissive medical system to get doctors to take his symptoms seriously.
He explains, “I was truly on the brink of not surviving at all because she could not convince somebody to look at me,” a line that will ring painfully true for many parents who’ve felt brushed off. You’ll hear about childhood spent on a strict diet designed around a shortened colon, and how years of blaming Hirschsprung’s for bathroom emergencies turned out to be undiagnosed lactose intolerance.
Tony talks through the shock of developing type 1 diabetes at 27, what a scary high blood sugar episode felt like, and how dehydration later triggered a bowel obstruction that landed him in hospital for a week. Despite this list of diagnoses, Tony works as an IT manager and is a multi‑instrument musician and piano teacher.
Music became his outlet from the age of three, when he started picking out notes on his grandparents’ piano, and later led him to marching band, tuba, and university‑level performance. Throughout, Tom keeps the tone practical and hopeful, stressing that many children with Hirschsprung’s grow up to “hold down a normal job” and follow their passions. The conversation stays honest about the hard bits, but there’s plenty of humour about bad ice cream, strict mums, and grandparents with contraband sweets.
If you’re living with Hirschsprung’s, parenting a child with it, or juggling multiple conditions yourself, this episode offers relatable stories, hard‑won tips, and a reminder that a full, creative life is still very much on the cards. What might your own version of that look like?
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