Tom's Hirschsprung's Podcast

We follow straight on from the first part as we chat through the rest of Elodie's Hirschsprung's story, including Laura's family history when it comes to this condition. As we talk through the family history it shows how different Hirschsprung's can be in each individual.

In an emotional first part, both Laura and Ed tell the story of their daughter Elodie and her remarkable Hirschsprung's battle. We start from the beginning with a litany of conditions that Elodie was born with including, Congenital malrotation of Intestine, Ultra-short Bowel Syndrome and Long Segment Hirschsprung's Disease. We talk about how all of these conditions were discovered and the procedur...

Karen talks about her 19 year old son Kai, and his experience with Hirschsprung's, Autism and ADHD as her starts to find a career. We chat about Kai's major passion in life of creative writing, and his determination to succeed in this field. Follow Karen:- TikTok - @embracewellnessclinicIG - well_its_k

**** NEW AND IMPROVED****This is the complete introduction of my podcast covering four different topics:- 1 - What is Hirschsprung's Disease?, including symptoms and potential treatments2 - Who am I?3 - Why am I doing this podcast?4 - What to expect from the show? This intro is far more relevant than the original made in 2024, and will hopefully give everyone a better starting point. Follow me on...

Multiple time marathon finisher and Bloomberg CFO Mark Schulz, joins me to celebrate the podcasts second birthday as he talks through his extraordinary family lineage dating back to the 1800's! As well as having short segment Hirschsprung's, Mark is also a father to his 3 year old son Remy who has Total Colonic Hirschsprung's, and we talk about his role in making sure that Remy is a happy, healthy...

Professional Doula and mum of 4, Tiffany, joins me to talk about her son and his Hirschsprung's diagnosis. A very interesting story of Hirschsprung's management without surgery, and Tiffany's reasons for doing so. We also chat about potential stem cell therapy and what the future may hold for Hirschsprung's patients moving forward. Enjoy the episode.

Gemma bravely shares the story of her 11 month old son Rowan, as we delve into the often unspoken topic on parental mental health when it comes to having a child diagnosed with a complex medical condition. We also talk about how to find information on Hirschsprung's and the importance of having a community, as it can be a very lonely place for parents. Please enjoy the episode! Merry Christmas!!!

With no family history of Hirschsprung's Lillie talks through her son's 8 month journey with this condition. We discuss hospital life, and how to navigate the challenging medical terms of a rare disease, as well as passing time when it comes to surgery. Both Lillie and her wife had never heard of Hirschsprung's, but after some initial difficulties we talk about how well Oakley is doing now.

I continue my chat with Jess as we take a greater deep dive into her life and living with Hirschsprung's Disease. Within this episode we will chat about living with a stoma, and the importance of having a community that understands this. Please enjoy the episode

Olympic gold medallist and former world record holder, Duncan Armstrong, joins me to celebrate the 100th podcast episode as we talk about all things Hirschsprung's and sport. Duncan reveals details surrounding his Hirschsprung's that he has never shared before, including a family connection and how he coped during childhood. We spend the majority of the episode talking about Duncan's greatest spor...

A truly remarkable journey unfolds, as Jess takes us through her life from the beginning. Jess will take us through an overview of her various conditions, including Hirschsprung's, Diversion Colitis, Vertigo, Complex PTSD, Autism, Bipolar Disorder and Tourette's! The first part of Jess's story is one of resilience, which will continue next week in part 2

We start this episode with Courtney's misdiagnosis of Encopresis instead of the Hirschsprung's she actually has. Unfortunately Courtney experienced medical gaslighting from her GP with a host of excuses, which led to life saving stoma surgery. Listen to a journey of resilience and self-advocacy, as well as a battle to raise awareness for Hirschsprung's.

Donna and I chat about PGD (Pre-Implantation Genetic Diagnosis) and how she and her husband went down this route when they had their child. Donna's 20 year old step-son has genetic Hirschsprung's , so Donna and her husband went through a PGD route so that we didn’t pass it on and stopped it in our family line. I appreciate that this can be a controversial and potentially divisive topic, but I felt...

Sydney chats to me about her 17 month old daughter, Loretta and how despite the early difficulties and uncertainties she is thriving now. Having also had multiple trips to the specialist hospital for Enterocolitis as well as a suspected perforated intestine, its been quite the year a half for the family so far! Enjoy the episode! Instagram - @Simacek_28

Ollie returns to the pod to talk about a few important subjects as well as an update on his life since we last spoke a few months ago. The episode will cover:-Fitness tips from his aerobics classesHow a vegan diet for 2 weeks affected his Hirschsprung'sHis new business venture to help women's fitness for both pre and post pregnancy Please enjoy the episode Follow Ollie - @bigfriendlypersonaltraini...

Sandeep talks about his son's Hirschsprung's condition, we talk about diet, medicine and treatments. This is a slightly shorter episode but it still packed with plenty of interesting topics that I hope you find very useful. Enjoy the episode!

Stacey from Rare Patient Voices joins me to talk about the vital work that the company does in supporting rare and non-rare conditions. We chat about how the business was formed and how it has grown many times over to be the world's leading medical research company. Stay tuned to find out how you can be paid up to $120 for filling out a survey using my personal referral link below.https://www.rare...

Sarah talks about her son Remy and his experience with Total Colonic Hirschsprung's Disease. During the episode I also find out the family dynamic when it comes to Hirschsprung's, and why it was very surprising when the hospital dismissed Remy's chances of HD.Around the mid-way point we chat about the Race for Every Child coming up on 18th October, which is a 5k event to raise money specifically f...

An inspirational story of resilience and perseverance continues, as Laura shares all about her latest business venture 'FYN Coaching' or 'Finish Your Now Coaching' The passion for coaching and seeing others succeed is evident in Laura's voice from the outset, as she shares some learning experiences in the last couple of months since becoming qualified. Join us again for part 5 in a few months time...

Paraglider and Metal Artist, Wim Predhomme joins me to talk through his life with Hirschsprung's, including some of the highs and lows that come along with the condition. Wim chats through various parts of his life, including how he copes with everything that Hirschsprung's throws at him and his love of paragliding. Enjoy the episodeFollow Wim - @wimpredhomme

Some very important topics are discussed in today's episode, as I chat with Saffire about her daughters diagnosis of Hirschsprung's 9 months ago. During what was undoubtedly a very stressful and worrying time for all the family, the miscommunication between hospital staff was the last thing anyone needed. We also talk about parental mental health and how it can be affected by having a child with a...

Sadie joins me to talk about her 4 year son Cody and his Hirschsprung's story. We start the story when Sadie is 10 weeks pregnant and she has a test for Cody that comes back as 1 in 8 chance of her son having Downs Syndrome. With Cody being Sadie and Andy’s second child, she knew what to look for and could feel that things were not as they were supposed to be. This all takes place during lockdown/...

We start this episode 7 months ago, Lexi has just given birth to her third child, Emmett and like many people, has no family history of Hirschsprung's and has never heard of the condition! What follows is a roller-coaster week of emergency rooms, out of body experiences and a speedy trip to the NICU, with doctors 99% certain of Hirschsprung's. A fascinating recount of the last 7 months, with lots...

2 generations of Hirschsprung's are discussed with Kirstie and her daughter Aubrey, we mainly chat about Aubrey's journey with TIA (Total Intestinal Aganglionosis) Aubrey chats about her condition, including how she explains Hirschsprung's to her friends and her admiration for a fellow Hirschsprung's warrior - Zoe Colletti. Please enjoy the episode Follow Kirstie - @Kirstie8811

Kelly chats to me about her son Kellen, who has Hirschsprung's and is 7 and half years old. In this episode we discuss the vital importance of mothers intuition and the need for this intuition to be addressed, with Kelly's son not being diagnosed until exactly 13 months of age. We also discuss Kelly's journey to find treatment as well as the events that led to the decision to have the MACE (ACE Ma...