Claim OwnershipTom's Hirschsprung's Podcast
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Welcome to the #1 Hirschsprung's Disease podcast...in the world!!
I provide a look into the remarkable experiences of some of the most inspiring people around this little known condition, that effects every 1 in 5000 people worldwide.
This podcast must not be taken as generic medical advice, but please feel free to enjoy the positive stories and take inspiration from my guests journeys and achievements.
My guests may not all have Hirschsprung's disease and may include people with Crohn's, Colitis or IBD as they show similar effects to Hirschsprung's Disease.
Please enjoy the show!!!
I provide a look into the remarkable experiences of some of the most inspiring people around this little known condition, that effects every 1 in 5000 people worldwide.
This podcast must not be taken as generic medical advice, but please feel free to enjoy the positive stories and take inspiration from my guests journeys and achievements.
My guests may not all have Hirschsprung's disease and may include people with Crohn's, Colitis or IBD as they show similar effects to Hirschsprung's Disease.
Please enjoy the show!!!
114 Episodes
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After giving birth just 11 weeks ago, Sarah joins me to talk about the whirlwind of the last few months!Sarah is also a Nurse Practitioner, specialising in gastroenterology, so comes at the subject of being a mum with a Hirschsprung's child from a unique perspective.With Leo's surgery in a couple of weeks, Sarah talks about her anxiety as a new mum preparing for his pull-through.
Emily tells the story of her 5 1/2 year old son, who is also a twin, and his journey with Hirschsprung's Disease. We talk about the late diagnosis, and how parental instinct kicked in when Emily and her husband realised something wasn't quite right.A difficult experience with salmonella a few months ago kept Leo in hospital for 5 days as Emily recounts how difficult this was for her twins.Please enjoy the episodeFollow Emily - @theemilyarner
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 procedures that took place in order to help Elodie.This is an episode full of resiliency, with part 2 out next week
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 Facebook, Instagram and TikTok - @toms_hirschsprungs_podcastContact me on socials or via email - tomshirschsprungspodcast@gmail.com
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 child.Mark also provides an update from his wife Sarah's episode on the amount of money raised from the 5K Race For Every Child, which will go to providing vital supplies for children with Hirschsprung's Disease.Enjoy the episode!
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 sporting triumph, his Olympic gold medal, including the mindset he had going in and the feelings during and after.Enjoy the episode!
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 as though this was an important aspect of Hirschsprung's to share.Please enjoy the episode.
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 pregnancyPlease enjoy the episodeFollow Ollie - @bigfriendlypersonaltraining
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 Voice 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.rarepatientvoice.com/rp/tomshirschsprungspodcast
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 for parents who need supplies such as Ostomy bags, sprays, wipes etc. - a very worthwhile cause indeed.If you would like to donate please use the link below:-http://giving.childrensnational.org/goto/RemySchulzEnjoy the episodeFollow Sarah - @snovatt21
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