Latest / Tom's Hirschsprung's Podcast / Episode 1 - An introduction to Hirschsprung's Disease and my story

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Episode 1 - An introduction to Hirschsprung's Disease and my story · Tom's Hirschsprung's Podcast

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  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
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  Speaker 1: tuning in, Hello, and welcome to episode one, the introduction
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  Speaker 1: of Tom's Hirshbrung's Podcast. For this introduction, I am going
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  Speaker 1: to go through four key points about Hirshbrungs and about
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  Speaker 1: me in the podcast. Those key points will be talking
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  Speaker 1: about what Hirshbrungs is, talking about, who I am, why
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  Speaker 1: I'm doing this, in terms of the podcast, and what
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  Speaker 1: to expect from the show. So, first things first, what
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  Speaker 1: is Hirshbrungs And whether you don't know what Hirshbrungs is
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  Speaker 1: at all, whether you know a lot about it or
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  Speaker 1: whether you know a little bit about it, this podcast
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  Speaker 1: is for you. So in terms of Hirshbrungs, it is
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  Speaker 1: a rare condition that causes pood to become stuck in
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  Speaker 1: the bowels. For many children, this is their large intestine
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  Speaker 1: can be the small intestine as well, and it doesn't
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  Speaker 1: work the way that it should, meaning that the bow
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  Speaker 1: can become blocked and result in infection. Children with Hirshbrungs
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  Speaker 1: more often than not will need surgery in order to
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  Speaker 1: remove the affected piece of the intestine. Of how many
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  Speaker 1: people this affects, the general consensus is around one in
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  Speaker 1: five thousand worldwide, so this would be about one hundred
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  Speaker 1: and fifty births a year in the UK, and there
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  Speaker 1: are different facts on that, but the general consensus amongst
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  Speaker 1: medical professionals is around one in five thousand. In terms
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  Speaker 1: of the symptoms of Hirshprungs. Again, for many of you've
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  Speaker 1: clicked onto this, you may have a child with Hirshbrungs.
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  Speaker 1: You may have Hirshprungs yourself, so you may be very
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  Speaker 1: much aware of the symptoms and what to look for.
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  Speaker 1: But the symptoms will be a failure to pass myconium
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  Speaker 1: within the first forty eight hours. So this is kind
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  Speaker 1: of the sticky baby poo. The first bowel movement if
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  Speaker 1: you will, happening sort of very soon after birth and
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  Speaker 1: later can be diagnosed as Hirschbrung's disease. A couple more
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  Speaker 1: really are a swollen belly and in green or sort
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  Speaker 1: of yellow green fluid known as bile. In terms of
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  Speaker 1: Hirschbrungs itself, there are lots of different types and mainly
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  Speaker 1: six different types of hirshprunks depending on how much of
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  Speaker 1: the intestine is affected. So these range from sort of
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  Speaker 1: the smallest part being ultra short right at the bottom
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  Speaker 1: of the large intestine, to short long total colonic total
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  Speaker 1: eganglianosis or segmented, so where you can have parts that
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  Speaker 1: are affected, then parts that are okay, and then parts
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  Speaker 1: that are affected again and some so the most common
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  Speaker 1: would be short segment which is the segment I have,
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  Speaker 1: and then sort of ranging from sort of ultrashore being
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  Speaker 1: incredibly uncommon and segmented and totally gangliosis probably being the
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  Speaker 1: most the most uncommon of those. In terms of the
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  Speaker 1: diagnosis of Hirshprungs, this will need to be done via
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  Speaker 1: a biopsy, so this is the only definitive way really
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  Speaker 1: of testing for Hirshbrungs is a rectal biopsy. So for
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  Speaker 1: that you'll need to take samples of cells from the
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  Speaker 1: rectum and look look at them under a microsote. If
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  Speaker 1: Hirshbrun's disease is present in that person, there will be
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  Speaker 1: no ganglion cells in the sample of the biopsy. From there,
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  Speaker 1: a full thickness biopsy is the most conclusive way to
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  Speaker 1: test for Hirshbrungs, but a suction biopsy might might also
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  Speaker 1: be used, and that will determine obviously how much of
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  Speaker 1: the intestine is affected, and usually doctors will keep going
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  Speaker 1: via or keep going through the intestin and to see
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  Speaker 1: how much is affected. And obviously the more that's affected,
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  Speaker 1: the diferent types of Hirschmungks then can occur from there,
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  Speaker 1: but some doctors will do other tests such as blood
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  Speaker 1: tests X rays. The dominal X ray will tend to
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  Speaker 1: show a distended bow so swollen sort above that affected section.
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  Speaker 1: Sometimes a contrast enema is also used to look at
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  Speaker 1: the bow as well. So that's really what Herschmrungs is
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  Speaker 1: in a nutshell. Obviously I can go through all but
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  Speaker 1: that would take a long long time. And I think
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  Speaker 1: it's also important to say that everybody's story is different
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  Speaker 1: depending on where you are, what doctor's surgeries you're at,
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  Speaker 1: what country you're in. That may depend on the types
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  Speaker 1: of treatments that doctors look at. And I think it's
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  Speaker 1: important to note that not everybody's story is the same,
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  Speaker 1: even for the same type of hirshprungs. So, for example,
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  Speaker 1: if you have the most common being short segment hirshprungs,
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  Speaker 1: there are still lots of different ways that that hirshbrungs
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  Speaker 1: or type of Hirshprungs is managed in different people. There
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  Speaker 1: are other associated conditions with hirshbruns, one being Down syndrome,
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  Speaker 1: which around nine to ten percent of people with Hirshprungs
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  Speaker 1: also have Down syndrome as well. It is also more
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  Speaker 1: common in males, sort of a ratio around four to
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  Speaker 1: one male to female in terms of Hirshbrungs as well.
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  Speaker 1: So the next part I'm still about it is just
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  Speaker 1: a little bit about me. So who I am, And
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  Speaker 1: then onto the final final couple of sections. So I
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  Speaker 1: have hrsprungs. I'm thirty three years old. I have short
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  Speaker 1: segment Hirshbrungs. So this was diagnosed at about three weeks
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  Speaker 1: two and alfter three weeks, which is usually a little
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  Speaker 1: bit later than more common cases. It's around forty eight hours,
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  Speaker 1: so when the mconium's not passed within forty eight hours.
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  Speaker 1: Then doctors start looking at signs of Hirshbruns. But I
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  Speaker 1: did pass myconium and still have Hirshbrungs. So again, like
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  Speaker 1: a lot of things, with Hirshbrungs, it's not necessarily a
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  Speaker 1: one size fit all. So I was diagnosed after about
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  Speaker 1: three weeks when I started to become drowsy, wasn't feeding.
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  Speaker 1: My condition was deteriorating rapidly, so I was then rushed
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  Speaker 1: to a local hospital where it was then decided I
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  Speaker 1: used to go to a larger, more a larger regional
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  Speaker 1: hospital as I needed more specialist treatment. The Hirshbrungs diagnosis
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  Speaker 1: was made there. At the larger hospital, an emergency coloss
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  Speaker 1: to me operation was then performed. Due to the severity
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  Speaker 1: of my condition, I was placed on life support. The
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  Speaker 1: chances of survival and recovery, although I will never ask
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  Speaker 1: and will never say a percentage, it was poor. The
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  Speaker 1: major issues I had were sepsis, which for anybody who
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  Speaker 1: has come across that before, is an incredibly serious condition
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  Speaker 1: in terms of bloodstream and severe tacer cardia. So takacardia
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  Speaker 1: is the medical term for a heart rate that beats
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  Speaker 1: over one hundred times per minute and you can imagine
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  Speaker 1: this in a three week old baby, not very good,
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  Speaker 1: which is effectively causing my already weakened body where I
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  Speaker 1: had started to become drowsy and WITHGIC, I was then
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  Speaker 1: at risk of cardiac arrest. Thankfully, my life was saved
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  Speaker 1: by a junior doctor who'd recently read in a medical
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  Speaker 1: journal that a shot of magnesium sulfate through my IV
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  Speaker 1: line could reduce my taco cardia. This is well known
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  Speaker 1: now in terms of medical research, but in nineteen ninety
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  Speaker 1: two this was completely new information. This was thankfully approved
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  Speaker 1: by the lead surgeon and it had the desired effect.
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  Speaker 1: I pulled through. Operation was made after nine months at
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  Speaker 1: Great Ormond Street, as well as my first stonma reversal.
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  Speaker 1: After that, I had naismal owne stemer introduced at nine
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  Speaker 1: years old, perversed at twenty three, and again this is
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  Speaker 1: another can be. Another part of Hirschbrown's is having colostomy
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  Speaker 1: or a colostomy in iliostomy, and again this is something
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  Speaker 1: that will be discussed with your doctor and for some
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  Speaker 1: people stonmas are permanent, for other people like me, they're temporary.
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  Speaker 1: And then had an ACE that became, I guess in
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  Speaker 1: the end temporary from the age of nine to twenty three,
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  Speaker 1: but this is something that can occur. I've had ten
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  Speaker 1: operations in total time of recording, do anymore, and apart
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  Speaker 1: from minor health issues from time to time, I lead
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  Speaker 1: a very normal life in terms of my working life.
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  Speaker 1: I have been lucky enough to work in professional cricket
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  Speaker 1: and professional football and run my own cricket development business.
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  Speaker 1: I write development plans for up and coming countries to
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  Speaker 1: help increase their participation numbers, and I hope this gives
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  Speaker 1: a little bit more context or behind who I am,
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  Speaker 1: and that kind of leads me on really to why
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  Speaker 1: I wanted to do this because I had never, like
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  Speaker 1: a lot of people with hirshprungs, I'd never met anybody
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  Speaker 1: else with hirshprungs. And when you have a rare condition,
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  Speaker 1: you'd like to see if somebody else in the world
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  Speaker 1: has it. And I wanted to know if there was
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  Speaker 1: anybody else in the world who has hirshprungs who was
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  Speaker 1: doing amazing things, or if there was anything I could learn,
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  Speaker 1: Because I will fully admit I was very ignorant at
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  Speaker 1: the start of this. I thought Hershbrungs was just Hirshbrungs.
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  Speaker 1: I didn't realize there were six different types. I didn't
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  Speaker 1: realize that there was a ten percent chance of down syndrome.
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  Speaker 1: I didn't realize that there was so many amazing people
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  Speaker 1: with Hirshbrungs out in the world. I didn't know anything
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  Speaker 1: about Ganglion sales, so it was a massive, massive eye
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  Speaker 1: opener for me. But I really wanted to find some
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  Speaker 1: amazing stories of people who are doing some incredible things,
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  Speaker 1: and whether that be celebrities, whether that be people who
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  Speaker 1: have wrote marathons, whether that's people who have done incredible
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  Speaker 1: things in terms of overcoming the arts, because everybody has
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  Speaker 1: Hirshbrungs overcomes the archts. And that's really why I wanted
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  Speaker 1: to start it, or really why I have started it,
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  Speaker 1: which again I think leads me on to my final
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  Speaker 1: point in this, which is what can you expect from
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  Speaker 1: the podcast? Now? There were a few things that I
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  Speaker 1: really wanted to do when I started this, one being
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  Speaker 1: that I wanted to bring you positive and uplifting stories
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  Speaker 1: about Hirshprungs, and there are an awful lot of those. Yes,
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  Speaker 1: there are times of ups and downs when it comes
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  Speaker 1: to the condition we those with Hirshprungs. No, it's not
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  Speaker 1: all plain sailing. There are times that are really tricky.
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  Speaker 1: As I've explained in my own story, I'm going through
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  Speaker 1: cardiac arrest and going through sepsis, but there are times
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  Speaker 1: of great achievement. Have talked about my cricketing achievements, and
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  Speaker 1: I think that's important to note as well that there
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  Speaker 1: are lots of ups and downs. Everybody's path is very
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  Speaker 1: much different. But I also want to try and find
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  Speaker 1: people who have come and done amazing things in their lives.
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  Speaker 1: A lot of the stories you will hear are from
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  Speaker 1: parents who have small children, very young children, But I
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  Speaker 1: also wanted to find people who were my age, maybe
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  Speaker 1: slightly younger, maybe a bit older, who have achieved incredible
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  Speaker 1: things in their lives and to give hope. Really again,
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  Speaker 1: if you're listening to this for the first time, to
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  Speaker 1: give hope to people who have children diagnosed with Hirschbrungs,
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  Speaker 1: to say, yes, you can look at these people who
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  Speaker 1: are doing incredible things. Yes, life is probably a bit
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  Speaker 1: of a whirlwind at the moment, probably be very very tricky,
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  Speaker 1: and there's lots of medical terms to try and get
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  Speaker 1: your head around and surgery and all of these very
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  Speaker 1: long and complicated words that you may have never heard before.
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  Speaker 1: But there are some people out there who have been
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  Speaker 1: through the same situation and are doing incredibly well. There's
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  Speaker 1: a few episodes if ever you're looking for inspiration that
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  Speaker 1: there's a ton of episodes in this series, but there
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  Speaker 1: are some ones in there if you're really looking for
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  Speaker 1: people who who've gone and achieved incredible feats. Episode one
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  Speaker 1: hundred Duncan Armstrong, Australian Olympic gold medalist with Hirstpruns in
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  Speaker 1: nineteen eighty eight he achieved gold medal. Episode thirty two
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  Speaker 1: Zoey Coletti, world famous actress, and the episode twenty eight
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  Speaker 1: with Louis Healy another world famous actors, and many many more.
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  Speaker 1: If I'd sat here all day, I'd end up repeating
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  Speaker 1: all of them. But there are some fantastic episodes out there,
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  Speaker 1: and I really really hope that you get what you
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  Speaker 1: want out of those ones and enjoy the episodes. Also,
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  Speaker 1: if you want to follow me on social media, there
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  Speaker 1: are several accounts that you can do Instagram and Facebook
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  Speaker 1: under Tom's Underscore Hirshbrung's Underscore podcast. I Am also on
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  Speaker 1: TikTok under the same name as well. If you want
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  Speaker 1: to email me, you can of course email me at
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  Speaker 1: Tom's Hirshbrungs Podcast at gmail dot com. If you ever
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  Speaker 1: want to get in touch, if you've ever want to
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  Speaker 1: be on the show, or if you ever just want
• 15:45
  Speaker 1: to say hi, you're more than welcome to contact me
• 15:48
  Speaker 1: and thank you for listening. Thank you for listening and
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  Speaker 1: being part of this growing community. If you have enjoyed
• 15:56
  Speaker 1: the episode, don't forget to subscribe, leave a review, and
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  Speaker 1: share it with someone who might need it. You can
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  Speaker 1: connect with us on social media via Instagram, Facebook, and
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  Speaker 1: TikTok under the name Tom's Hirsprung's Podcast. See you next week.