97: The Hirschsprung’s Hour with Tom Richard - Episode 9797: The Hirschsprung’s Hour with Tom Richard - Episode 97
UK Health Radio Podcast
Tom Richard talks with fellow presenter Stephanie about her extremely rare form of Hirschsprung’s disease, from childhood surgeries to life on TPN and ileostomy. Their conversation focuses on self‑advocacy, daily management, and finding humour and connection while living with a complex chronic condition.
43:47•29 Sept 2026
Living Rare: Stephanie’s Hirschsprung’s Story, Survival and Self‑Advocacy
Episode Overview
- Hirschsprung’s can require lifelong management, repeated surgeries and changing treatment plans rather than a one‑time “fix”.
- Learning medical language and reading journal articles can help patients argue for appropriate care, especially with rare conditions.
- Strong relationships with willing, curious practitioners are crucial when standard protocols don’t fit a complex case.
- Planning ahead for food, toilets and energy levels makes social events and travel more manageable, even if it means saying no sometimes.
- Honesty about mental health, allowing bad days and using humour and storytelling can make long-term illness more bearable.
“I’ve done a lot of educating instead of being just a patient.”
Get ready to be moved by a real-life account of living with one of the rarest gut conditions around. UK Health Radio’s Hirschsprung’s Hour brings together host Tom Richard and fellow radio presenter Stephanie for a candid chat about life with total colonic Hirschsprung’s disease and intermittent small bowel involvement.
From the start, you’ll hear how close her parents came to losing her as a baby, being told to “take me home, make me comfortable” before a late transfer to a specialist children’s hospital finally led to a diagnosis and the first of many surgeries.
Stephanie explains how her condition has changed over time: childhood spent under the care of a beloved Chicago surgeon, a brief spell of “somewhat normal” life at university, and then a steady increase in complications in her late 30s. She talks frankly about ileostomy surgery, multiple bowel obstructions, and becoming TPN-dependent six nights a week, describing the strange mix of planning and unpredictability that shapes her days.
Food is a huge part of her identity – “food and the experience of eating is, like, 80 to 90% of my personality” – so the loss of being able to eat freely hits hard. A big thread through the conversation is advocacy. Stephanie explains that with such a rare presentation, she often has to educate doctors herself, digging into medical journals and learning the language of healthcare to argue for what she needs.
She stresses the importance of “someone that’s willing to do that extra work” and the mental load of constantly fighting for appropriate care. There’s lighter stuff too: scars turned into shark-attack stories on Hawaiian beaches, radio projects she runs with her veteran husband, and gentle humour about planning life around toilets, salt shakers and safe foods.
Anyone living with a chronic or rare condition – or parenting a child with one – may feel seen, reassured and a little less alone after this conversation. What parts of Stephanie’s story sound most familiar to your own?
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