Latest / Tom's Hirschsprung's Podcast / Episode 77 - With Georgina Merckel (Part 3)

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Episode 77 - With Georgina Merckel (Part 3) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's Disease and sports. Hello and welcome to
0:42
Speaker 1: episode seventy seven of Tom's Hirsprung's Podcast. I'm delighted to
0:46
Speaker 1: welcome back Georgina. Part one we talked about stats and
0:53
Speaker 1: we talked about research. If you haven't had a listen
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Speaker 1: to that, please do. Incredibly interesting lots of research going on,
1:01
Speaker 1: especially in UK and Ireland. For this episode, we are
1:04
Speaker 1: going to talk about the brand new website that you
1:06
Speaker 1: have launched, and we're also going to have an update
1:09
Speaker 1: on Freddie and welcome back.
1:11
Speaker 2: Thank you.
1:13
Speaker 1: So so. The website that you have launched at ww
1:20
Speaker 1: dot hirsh Brungs Disease dot co dot UK something that
1:25
Speaker 1: you've been working on for quite a while. Roughly how
1:28
Speaker 1: long has that taken you.
1:30
Speaker 2: I think it's taken me about five months, to be honest,
1:34
Speaker 2: From the first idea that I had it, then I
1:37
Speaker 2: did a lot of research to find out that there's
1:38
Speaker 2: ending ours to like it because I didn't want to
1:40
Speaker 2: take somebody else's idea. Then I started putting together what
1:44
Speaker 2: I wanted it to look like. And I mean the
1:48
Speaker 2: fact that Hirshbrong Disease dot co doit uk is available
1:51
Speaker 2: available to purchase shows how little information there is, because
1:58
Speaker 2: I couldn't believe that when I typed that in it
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Speaker 2: we'd have to be some sort of name. But literally
2:03
Speaker 2: all I have to do with search hirshbrng disease like
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Speaker 2: can it comes up as well as dot com comes
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Speaker 2: up as well. So I think that just shocked me
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Speaker 2: a little bit and it made me think, right, I
2:12
Speaker 2: need to do this. So for anyone who hasn't seen it,
2:16
Speaker 2: it is a website designed for anyone to look at really,
2:22
Speaker 2: but it's it's a parent leed resource, so it's not
2:25
Speaker 2: medical professional lead. The idea being that information about Hirshbrung's
2:30
Speaker 2: disease is available to read, to look to understand, because
2:37
Speaker 2: if there's no one single resource to find your information,
2:42
Speaker 2: and I think that's a hard thing when it comes
2:45
Speaker 2: to getting that diagnosis at any point, whether you're an
2:49
Speaker 2: early diagnosa or late diagnosis, and then starting to try
2:53
Speaker 2: and understand it and to be able to explain it
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Speaker 2: to other people, and that whole experience is quite tricky
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Speaker 2: and often I think medical professionals they do their absolute
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Speaker 2: best to explain the situation you're in at the moment,
3:10
Speaker 2: and for me and other people, you want to know more,
3:13
Speaker 2: you want to understand more, and it's helpful to have
3:17
Speaker 2: that in one place. And that was my idea was
3:19
Speaker 2: that I would start collating the information as I found it,
3:23
Speaker 2: because there is lots of hospitals have leaflets and a
3:25
Speaker 2: bit of information and you can find bits on baby
3:27
Speaker 2: stomas and you can find bits on what a wash
3:30
Speaker 2: out is, but it's everywhere, and you know, there's no
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Speaker 2: consistent at the moment, there's no consistent sort of information
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Speaker 2: that you get when you get your diagnosed. It depends
3:41
Speaker 2: what hospital you're at, it depends what surgeon you're at,
3:43
Speaker 2: depends who give you the diagnosis. And I just thought
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Speaker 2: if we can standardize that little bit, then that will
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Speaker 2: really help families. So it's a collection of experiences from
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Speaker 2: families all over the UK so that people can find information,
4:02
Speaker 2: connect with each other and find support as well, because
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Speaker 2: we have a fantastic Facebook group of families already that's
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Speaker 2: been set through years before Freddie got his Diagnosice Tom's
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Speaker 2: podcast obviously is fantastic. We've got the Community Planning Group
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Speaker 2: which has recently you know, come about so that we
4:22
Speaker 2: can connect. We have the Hirshbron's Conference in all the
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Speaker 2: hay It's just helpful for got one place for this
4:28
Speaker 2: all of information and also things that are relevant because
4:32
Speaker 2: not every experience of hirshbrun because is the same. You know,
4:35
Speaker 2: somebody might have a stoma, but someone might never have
4:37
Speaker 2: a stoma. Somebody might be eligible to apply for disability
4:42
Speaker 2: living allowance, but did anyone ever tell them that? And
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Speaker 2: that was my idea in that if we can put
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Speaker 2: this information in one place at least, if you want
4:50
Speaker 2: the information, you can find it.
4:52
Speaker 1: Yeah. No, I think it's I know, I've put something
4:55
Speaker 1: on Instagram about it and I really feel that it is.
4:59
Speaker 1: It's a fantastic stick resource. I've also it's I know,
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Speaker 1: it's Hirshprung's Disease dot co UK and it is very
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Speaker 1: UK centric in terms of things that you said like
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Speaker 1: the disability living allowance and hospitals and this, that and
5:14
Speaker 1: the other. But I've sent it over to my colleagues
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Speaker 1: are reach as well because i think it's incredibly useful
5:24
Speaker 1: for them as well. It's it is UK centric to
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Speaker 1: a lot of points, but there's so many fantastic stats
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Speaker 1: on there as well that I think even if and
5:37
Speaker 1: symptoms and diagnosis and all sorts that even if you're
5:41
Speaker 1: not from the UK, and I know there are many
5:42
Speaker 1: listeners to this podcast that are not UK based, I
5:48
Speaker 1: think it's incredibly important to just go and have a
5:50
Speaker 1: look and have a wander around that as well, because it's, Yeah,
5:55
Speaker 1: as you said, there's so many bits of information out there,
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Speaker 1: and to collate it all in one place in the
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Speaker 1: format that you have is so so useful. And like
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Speaker 1: I mentioned in my post, if something like that had
6:11
Speaker 1: been around thirty years ago, my parents have been absolutely delighted,
6:16
Speaker 1: and I dare say that the same for a lot
6:18
Speaker 1: of people. You know, to have this condition, as we
6:22
Speaker 1: mentioned before, to have a condition that not many people know,
6:26
Speaker 1: and even when you go to GPS, there are quite
6:28
Speaker 1: a few GPS that look at you and have certainly
6:31
Speaker 1: looked at me in the past and gone h what.
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Speaker 1: So to then have a website that's dedicated to our condition,
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Speaker 1: I think is phenomenal.
6:44
Speaker 2: Thank you. I think it's one of those things, isn't it.
6:47
Speaker 2: Where I mean it is UK centric and that was
6:51
Speaker 2: deliberate because there are so many people all over the
6:54
Speaker 2: world who have Hirschmung disease and are doing the same thing,
6:58
Speaker 2: trying to find information and feeling pretty lonely, and I
7:00
Speaker 2: think that that is really hard. I think it was
7:04
Speaker 2: so difficult finding lots of different information that was different
7:08
Speaker 2: in different countries, and that that is hard to read
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Speaker 2: and understand. Write is that UK is this is what
7:14
Speaker 2: we do in Canada like that. That was a tricky
7:17
Speaker 2: as well. I thought if we have something that's UK
7:20
Speaker 2: based and is parent led from the UK, it just
7:26
Speaker 2: sort of standardizes what we're looking at with pointers then
7:30
Speaker 2: to what the research. There's a lot of research in
7:31
Speaker 2: Japan I've been looking at and different areas and Reaches
7:35
Speaker 2: is one of those fantastic organizations, and then we can
7:38
Speaker 2: point in those directions and we can and we can
7:41
Speaker 2: just make it easier to understand, to read the information
7:47
Speaker 2: and digest a little bit. So I hope those non
7:52
Speaker 2: UK hirshel Frog disease individuals are not too offended though
7:55
Speaker 2: it is focus on the UK, because I still value
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Speaker 2: you completely and Italy as well.
8:00
Speaker 1: Yeah, no, I did. I did just want to laze
8:02
Speaker 1: it as well that it is. Yes, it's dog cut
8:04
Speaker 1: of the UK and it's very UK centric, but there
8:06
Speaker 1: is so much information out there that that is so important.
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Speaker 1: And I did have an email back from Reach today
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Speaker 1: saying how much they liked it and that they are
8:17
Speaker 1: going to pass it on as well because it is
8:19
Speaker 1: it's Hirshprung's diseasey, Hirshbrung's disease, no matter what country you
8:23
Speaker 1: live in, and it's just the way things obviously done
8:27
Speaker 1: in this country are are a little bit different because
8:29
Speaker 1: you know we have NHS and and things like that. Yeah,
8:32
Speaker 1: but it is it's just sort of too brief. Overview
8:36
Speaker 1: of the website, there are five five parts of it
8:42
Speaker 1: sort of this home information, support, stories, and then a
8:46
Speaker 1: contact us page. I think in terms of the stories,
8:53
Speaker 1: what's the sort of plan for that going forward, so.
8:58
Speaker 2: That that is to collect people's individual stories, whatever their experience.
9:07
Speaker 2: Because like we have talked about in the last episode,
9:10
Speaker 2: and like we hear about in the podcast, you know,
9:11
Speaker 2: you've got seventy seven episodes where almost all of them
9:14
Speaker 2: now are Hirshbungs disease. There's a good proportion of Hirshbungs
9:19
Speaker 2: disease stories, and I think one of those things that's
9:22
Speaker 2: really helpful is being able to learn from other people,
9:25
Speaker 2: just hear what their story is and film alone. Because
9:27
Speaker 2: although everyone's experiences is individual, there are lots of crossover
9:31
Speaker 2: where you'll go that was my experience or that was
9:35
Speaker 2: my experience, and I think it's really helpful if we
9:38
Speaker 2: collect that information. So some of the podcast episodes feature
9:42
Speaker 2: on you know, Tom's given me all the UK ones,
9:44
Speaker 2: the hirshbongs Z so I can put them on. And
9:47
Speaker 2: then we've got contributions as well, coming in from people
9:50
Speaker 2: who feel able to share their story, no matter what
9:57
Speaker 2: it looks like, whether you had what you know, we
9:59
Speaker 2: might call inverticome as a relatively easy experience, whether you
10:02
Speaker 2: had a relatively complex experience. I want to know because
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Speaker 2: I think it's really helpful for families to know what
10:11
Speaker 2: your experience was like and make others It helps other
10:15
Speaker 2: people feel less alone. And where possible, maybe we'll get
10:18
Speaker 2: contributions from medical professionals, maybe some q and as, maybe
10:22
Speaker 2: some specific you know, traveling with hershpring disease, traveling with
10:26
Speaker 2: a stoma, applying for benefits that are available in the UK,
10:33
Speaker 2: things like that I think some deep dives on those
10:35
Speaker 2: areas will be really helpful. And that's what I hope
10:37
Speaker 2: for the stories as well, just to create some space
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Speaker 2: for people to share those if they feel able, anonymously,
10:43
Speaker 2: all with their name.
10:45
Speaker 1: Yeah. Yeah, that's that's important as well, because I know
10:47
Speaker 1: that there are some people that certainly I've spoken to
10:51
Speaker 1: in the past who maybe didn't feel as comfortable to
10:55
Speaker 1: come on a podcast and talk about it. Maybe it
10:57
Speaker 1: was quite raw, maybe they've only you know, just had
11:01
Speaker 1: the diagnosis, or they've been through quite a stressful or
11:03
Speaker 1: traumatic time, but feel more comfortable potentially in writing, writing
11:08
Speaker 1: the story down, or writing and sending it through anonymously.
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Speaker 1: So it's really good that there are that there are
11:17
Speaker 1: options with that as well.
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Speaker 2: Yeah, I think so, I hope, I hope so anyway,
11:21
Speaker 2: and you know, over time, I hope it grows as
11:25
Speaker 2: a space for people to read and look at those stories.
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Speaker 1: Yeah, most definitely. And then there is another part of
11:33
Speaker 1: the page which I think is incredibly relevant, the support page.
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Speaker 1: There's all manner of organizations I'm on there. Thanks for that,
11:44
Speaker 1: but I just put that in. But yeah, there is
11:50
Speaker 1: a support page, and again that there's some some parts
11:56
Speaker 1: of that page that I wasn't one hundred percent familiar with.
12:00
Speaker 1: Then I spend all day within the hirshbrung sector. So
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Speaker 1: I think that's another part that is so important, because,
12:10
Speaker 1: like you said, when you have that diagnosis, nobody's ever
12:14
Speaker 1: heard of it, Your friends have never heard of it.
12:17
Speaker 1: GB's barely ever heard of it. Getting that support is
12:23
Speaker 1: just so so important. And I guess one of the
12:27
Speaker 1: questions that I've got for you in that context is
12:32
Speaker 1: that is there an aim over time to maybe get
12:38
Speaker 1: this into say, for example, older hay, so that when
12:46
Speaker 1: a baby is born with hirshbrungs, they can then kind
12:49
Speaker 1: of say, yes, here's how you do the bow washouts,
12:52
Speaker 1: and this is a stomachare and this that. Oh and
12:55
Speaker 1: by the way, here's a website with those of great info.
12:59
Speaker 1: Is that possibly a plan for the future, that's the aim?
13:02
Speaker 2: I mean, the ideal scenario would be that any parent
13:07
Speaker 2: in the UK who gets their diagnosis that their child
13:09
Speaker 2: has hushbugs disease is pointed in the direction of the website,
13:13
Speaker 2: just in case they want to. And every hospital has
13:16
Speaker 2: different responses to this, so some hospitals give you a leaflet.
13:21
Speaker 2: At one hospital, there is a Hush Bugs card you
13:25
Speaker 2: can have which has got one side key science apart
13:28
Speaker 2: friend triglitis, and on the other side has a medical
13:30
Speaker 2: alert card, so if you go to hospital, you hand
13:33
Speaker 2: it over to someone and it tells them what to do.
13:35
Speaker 2: I think that is really interesting. I have had conversations
13:38
Speaker 2: with all the hay so far it does look like
13:41
Speaker 2: it will be possible as a first step, So that
13:45
Speaker 2: is really exciting. And you know, I hope that over
13:51
Speaker 2: the next month or so we might have some more
13:54
Speaker 2: information about that. But that is my aim because I
13:57
Speaker 2: mean the support page is still so basic in its form.
14:01
Speaker 2: I mean I haven't even been through and added all
14:02
Speaker 2: the support that's available families with Hirschbrungs disease. But because
14:06
Speaker 2: it depends on your individual scenario, whether you've got a
14:09
Speaker 2: somach an iliostomya or a cost to me, whether you
14:12
Speaker 2: are dealing within continents, whether you fit into being eligible
14:16
Speaker 2: for family fund, whether you want to have community, whether
14:20
Speaker 2: you want to listen to podcasts, whatever your experience. That's
14:24
Speaker 2: different and depends on your own scenario. So my idea
14:28
Speaker 2: with this page is you can look down this and
14:30
Speaker 2: look what's relevant for you. Do I want to listen
14:32
Speaker 2: to podcasts as a couple of podcasts that cover this.
14:35
Speaker 2: Do you want to follow people on Instagram? Follow people
14:38
Speaker 2: on TikTok? Do you want to look for a charity?
14:39
Speaker 2: Do you need money? Where? What is it that you
14:42
Speaker 2: need and can you find it in this page? That
14:45
Speaker 2: is my aim for this page. I still have. I mean,
14:49
Speaker 2: I launched your website and it is not perfect and
14:52
Speaker 2: it's not ready in terms of I wanted to do
14:55
Speaker 2: so much more, but I knew if I just you know,
14:57
Speaker 2: I just if I sat on it for much longer,
15:00
Speaker 2: it would take ages. So I was like, right, let's
15:01
Speaker 2: put it out there. Let's get some feedback. I mean,
15:04
Speaker 2: I actually sent the link to one of the registras
15:09
Speaker 2: se any registras at all the hate when I was
15:10
Speaker 2: having a conversation with her with a half done page,
15:14
Speaker 2: because I said, because it was, it was live, it's
15:16
Speaker 2: just hidden on the internet. I said to her, you know,
15:19
Speaker 2: I was talking to me on a conversation about hashbrgs
15:21
Speaker 2: and studies and things like that, and I said, well,
15:24
Speaker 2: I've started this thing. Have a look. So, I mean
15:28
Speaker 2: it was in its really basic form, but the information
15:30
Speaker 2: page was ready. That was the most important bit. To me.
15:32
Speaker 2: So I decided to go for it, and I've got
15:34
Speaker 2: a list of sixty four things I'd like to add
15:37
Speaker 2: over the next few weeks. But yeah, the support page
15:40
Speaker 2: is the idea that you will go and you will
15:41
Speaker 2: look down and say, this is what's the pointing you
15:43
Speaker 2: do any Facebook group? Do I want to meet up
15:46
Speaker 2: with people? What do I know? Want? It's going to
15:48
Speaker 2: be here so that you can look And that is
15:51
Speaker 2: my aim, and to create some collaboration with the charities
15:53
Speaker 2: that you can get access support from. And you know,
15:57
Speaker 2: some of the links on those leaflets that you might
15:59
Speaker 2: get from the hospital, they're out of date now. Some
16:02
Speaker 2: of the links that work, some of the groups don't
16:04
Speaker 2: exist anymore, and I think that's pretty tricky. If you
16:08
Speaker 2: get there and you got to take that leap at
16:09
Speaker 2: home and you look for those places and they're not there,
16:11
Speaker 2: that's hard. So my own is that this is just
16:13
Speaker 2: a place to find that stuff in one place that
16:16
Speaker 2: we can add to consistently.
16:18
Speaker 1: Yeah. Yeah, that's the thing. He's live as well. So
16:23
Speaker 1: it does just something in terms of out of day.
16:27
Speaker 1: One thing that came to my mind is champs. I
16:29
Speaker 1: still hear people who kind of say, oh, is CHAMP
16:32
Speaker 1: still going, Is it still around or is that the
16:34
Speaker 1: other And to my mind, I believe it it older
16:38
Speaker 1: or certainly isn't operating anymore. But there are some leaflets
16:42
Speaker 1: out there that people get given where they say, oh
16:46
Speaker 1: you can contact CHAMPS and you can't. So to have
16:50
Speaker 1: something that is constantly updated rather than a leaflet or
16:55
Speaker 1: whatever it might be that will just be out of
16:56
Speaker 1: date possibly in a few years, I think that's reallytant
17:00
Speaker 1: as well.
17:00
Speaker 2: And I think I think CHAMPS is a phenomenal organization
17:03
Speaker 2: that isn't there are operating for ten years, but there's
17:07
Speaker 2: a lot of responsibility to run a charity, and I
17:09
Speaker 2: think and there isn't any hursh from specific charity right now,
17:13
Speaker 2: and I think that's another point that is so prevalent,
17:18
Speaker 2: right so I think, but yeah, it isn't operating at
17:23
Speaker 2: the moment, is close gording to Charities Commission, And I
17:25
Speaker 2: think that that is one of those things that's super
17:29
Speaker 2: important to know where you can get support. You know,
17:32
Speaker 2: people try and join Facebook group or get support or
17:34
Speaker 2: from there's other links out there as well, the groups
17:37
Speaker 2: that sort of don't exist anymore or there isn't the
17:41
Speaker 2: support available there, So I think it's important that we
17:43
Speaker 2: get some up to date support available where we can
17:45
Speaker 2: point people in the right direction. I hope across the
17:48
Speaker 2: UK get into one first and then we'll spread the word.
17:51
Speaker 1: Yeah, definitely. But I think you're right as well in
17:54
Speaker 1: the fact that there is there is a huge community
17:57
Speaker 1: out there. If anybody wants to do the proof of that,
18:00
Speaker 1: I mean, just take a look at the Hirshprung's conference
18:03
Speaker 1: in when was it February? I mean there was tickets
18:08
Speaker 1: were sold out. I know you shared the link and
18:11
Speaker 1: Rachel shared the link and I share the link when
18:13
Speaker 1: we found it, and tickets were sold out fairly quickly.
18:18
Speaker 1: And I think it just shows the appetite that people
18:22
Speaker 1: have for a specific Hirshprungs community, which again for people
18:27
Speaker 1: potentially outside of the bubble we're in. You know, when
18:32
Speaker 1: you come across people who don't know what it is
18:34
Speaker 1: to then know that there is a community out there
18:39
Speaker 1: that are that are sort of I don't want to
18:44
Speaker 1: it's desperate for more info, but two to have more
18:52
Speaker 1: of a community, more support, more info and education I
18:57
Speaker 1: think is incredibly important.
19:00
Speaker 2: Yeah, I think so too, And yeah, exactly, you've something up.
19:05
Speaker 2: I can't say the words any better. I think that's it.
19:07
Speaker 2: That's why we need it. So yeah. And then there's
19:11
Speaker 2: the information page, which is essentially like a Wikipedia page.
19:14
Speaker 2: I hope it looks like that of information from start
19:18
Speaker 2: to finish, and it's important to know it's editable. You know,
19:23
Speaker 2: people have I mean I put it out for feedback,
19:25
Speaker 2: and people one picked up for my spelling mistakes, Thank
19:28
Speaker 2: you very much for those, but also said that this
19:31
Speaker 2: wasn't my experience or I didn't get this, and that
19:35
Speaker 2: helped me because I only have the experience I know,
19:38
Speaker 2: and the experience I've researched, and the information I can find,
19:41
Speaker 2: which is hopefully helpfully linked all the way through. So
19:43
Speaker 2: if you find the information about washouts, the link to
19:45
Speaker 2: the leaflet got it from is there. But also it's
19:50
Speaker 2: helped me amend things from will to may can, possibly
19:54
Speaker 2: because I realized that not everyone's experience is the same.
19:56
Speaker 2: And I think it's really important that this becomes an
20:00
Speaker 2: evolving page, literally like Wikipedia, where we are updating it
20:04
Speaker 2: with more and more information as we get it. I
20:07
Speaker 2: mean the genetic side of things. I mean, I'm still
20:11
Speaker 2: writing that section because I want it to be informative
20:15
Speaker 2: and correct. So I'm still working on that section, and
20:18
Speaker 2: there's still bits I want to add a huge list.
20:22
Speaker 2: But my hope is that you can go when you
20:24
Speaker 2: can read through and think, right, that's that. What's a
20:26
Speaker 2: feeding tube? I mean I didn't even know what an
20:28
Speaker 2: MG twoe before I had Freddy was. I had never
20:30
Speaker 2: thought about taking blood from a baby and using heel
20:35
Speaker 2: prick or fingerprick or toe prick that. I mean, I
20:37
Speaker 2: just assumed that all people blood test through your veins.
20:42
Speaker 2: I had never thought about people who have stomas experiencing dehydration.
20:48
Speaker 2: I had not thought about sort of recycling through a
20:52
Speaker 2: mucus Fischler. Never even heard of that until somebody told
20:55
Speaker 2: me that that's what happens. Sometimes I think, yeah, So
21:00
Speaker 2: that's my aim. It's to be evolving and to be
21:04
Speaker 2: something that you can go and find that information over time,
21:06
Speaker 2: and the helpful things like saying in hospital financial support.
21:11
Speaker 2: I mean, I didn't know until recently that you can
21:13
Speaker 2: if you have a stoma or you use extra water
21:16
Speaker 2: because of a disability, can apply for a cap on
21:18
Speaker 2: your water bill so that you are not charged over
21:23
Speaker 2: a certain limit. I mean, who knew that was a thing.
21:25
Speaker 2: I mean, no one told me explicitly, you can apply
21:28
Speaker 2: for DLA, you can apply for a blue badge. I
21:30
Speaker 2: didn't know those things, and I think it's really important
21:34
Speaker 2: if families know that information so they can learn from it.
21:38
Speaker 1: Yeah, definitely, And it's important to say as well that
21:41
Speaker 1: that everything you've written there is the reference to it
21:44
Speaker 1: there as well, which is incredibly handy. I know you
21:49
Speaker 1: said that you are currently writing a part on the
21:54
Speaker 1: genetics the genetics side, I imagine that will take you
21:58
Speaker 1: probably years in years and years to have if you
22:03
Speaker 1: were to ever find any definitive proof or any because
22:07
Speaker 1: that is a mine field just from personal experience.
22:13
Speaker 2: Part of it. I really wanted to make sure that
22:15
Speaker 2: it's factual because there's no medical profession involved in writing this.
22:20
Speaker 2: It is just me and then the experiences of other
22:22
Speaker 2: people informing what I find as well and what I
22:24
Speaker 2: found on the internet. But so I've read a real
22:30
Speaker 2: effort to make sure that everything I have written about
22:33
Speaker 2: has a reference. All says parents Report, because you know,
22:37
Speaker 2: you can look in the Facebook group and find people
22:40
Speaker 2: talking about situations. You can hear on the podcast people
22:42
Speaker 2: telling you about their scenarios, but those are individual circumstances
22:48
Speaker 2: and right now, there isn't a medical link that says
22:52
Speaker 2: x y Z, but I can put it on there
22:54
Speaker 2: as a parent's report or you know, we find and
22:58
Speaker 2: doctors that I've spoken to knowledge this, but we find
23:01
Speaker 2: that some children with hirshbring disease are more susceptible to
23:04
Speaker 2: viruses and illnesses in those early years for some reason,
23:07
Speaker 2: more likely to end up in hospital with a virus
23:09
Speaker 2: or illness, whether they have a stone or not. That's
23:12
Speaker 2: not written anywhere on the internet. That's just people's experiences,
23:14
Speaker 2: and if you look in the Facebook group that you
23:16
Speaker 2: can see that that as an experience that people have.
23:18
Speaker 2: I've experienced it, so I included that with the information
23:23
Speaker 2: that you know, parents find. Some people find this is
23:26
Speaker 2: the situation that they're in, so other people know they're
23:28
Speaker 2: not alone, and that it appears that over time the
23:35
Speaker 2: likelihood of ending in the hospital with an illness reduces with
23:38
Speaker 2: Hirshbrong disease. But there's nothing that says that anywhere. So
23:41
Speaker 2: that was my aim with just just to be as
23:44
Speaker 2: factual as possible, but include the parent experience as well,
23:47
Speaker 2: so that we get both sides of that. Because there's
23:49
Speaker 2: only so much medical info out there. So, Yeah, that
23:54
Speaker 2: was my that's my that's what my aim with this page.
23:56
Speaker 1: Yeah, and I think we've we come and Hirshbrung's from
24:01
Speaker 1: the same angle with that, with that sense with it
24:04
Speaker 1: being parent led or story lead or whatever it might be,
24:10
Speaker 1: because I think often those are either as important or
24:16
Speaker 1: potentially more important than having a lot of medical info. Yeah,
24:23
Speaker 1: having somebody's experience like Okay, I had this, this is
24:27
Speaker 1: the way I dealt with it, or you know, this
24:32
Speaker 1: is what happened to me, or this is what happened
24:34
Speaker 1: to my child and this is what we did and
24:36
Speaker 1: blah blah, blah blah blah. You know, I think those
24:40
Speaker 1: kind of things are incredibly valuable because they are real
24:45
Speaker 1: life experiences. They're not somebody who you know studied it
24:49
Speaker 1: or there are real life experiences. I think there's a lot.
24:52
Speaker 1: There's a lot to be said for that.
24:54
Speaker 2: Yeah, I think so too. I think so too. And
24:57
Speaker 2: that's that's the aim. And I I hope that it
25:01
Speaker 2: is lasting decades. If there's a point in our experience
25:05
Speaker 2: where Hushbrongs disease isn't, like I said on the previous episode,
25:09
Speaker 2: a daily discussion topic for us at the moment, it is,
25:12
Speaker 2: but maybe I think hopefully the website will still exist,
25:14
Speaker 2: it can be passed on to someone else, and it
25:17
Speaker 2: can be continued to develop for years. That is, that
25:22
Speaker 2: is the aim, the aame for it to always be
25:25
Speaker 2: updated and information so that yeah, if I if I
25:30
Speaker 2: run out of Hushburgs theme of information, that somebody else
25:33
Speaker 2: will be able to take it over and continue, and
25:35
Speaker 2: that that's the same in the future, that all hospitals
25:38
Speaker 2: give out this information or at least the link to
25:40
Speaker 2: find it when they get that diagnosis.
25:44
Speaker 1: So yeah, yeah, no, that's fantastic, and I'm incredibly glad
25:49
Speaker 1: that you've that You've put a lot of a lot
25:53
Speaker 1: of time and effort into this. And if if people
25:55
Speaker 1: wanted to share their stories with you, there is a
26:01
Speaker 1: contact page on there as well.
26:03
Speaker 2: There is there's a there's a Google form you can
26:06
Speaker 2: fill in with your story if you want some prompts.
26:08
Speaker 2: If you want to write your story, you can absolutely
26:11
Speaker 2: do that and email it across. You can do it anonymously,
26:14
Speaker 2: you can do it with pictures, you can whatever you feel.
26:17
Speaker 2: And I have spoken to so many people that I've
26:19
Speaker 2: either said my story is not detailed enough to share anything,
26:23
Speaker 2: which in course it is. It's important if you feel
26:26
Speaker 2: able to share it and you want to share it,
26:28
Speaker 2: then to do so. But also so many families have
26:30
Speaker 2: said when I'm ready, I will share, And I think
26:33
Speaker 2: that's an important part because I think the experience of
26:35
Speaker 2: being a parent with any complex medical condition is pretty
26:39
Speaker 2: traumatic and I think if you're in those early years,
26:43
Speaker 2: it can be really stressful. And so there's absolutely no
26:47
Speaker 2: obligation to share, but if you feel able to put
26:49
Speaker 2: it all down and share, then we would love to
26:54
Speaker 2: have it and to put it on there. So I've
26:57
Speaker 2: already got some coming in and some people contact and
27:00
Speaker 2: really interesting, so hopefully that shares. And I mean my
27:03
Speaker 2: TikTok about launching the websites reached one hundred thousand views now,
27:07
Speaker 2: and there's people messaging me saying, like, I got diagnosed,
27:10
Speaker 2: I got a diagonois last week, and someone else saying
27:13
Speaker 2: I didn't get a diagnosis, but I'm so interested that
27:15
Speaker 2: you did this because when I thought that that was
27:17
Speaker 2: the diagnosis my son was going to have, I looked
27:20
Speaker 2: and looked, and I was trying to educate myself. I
27:22
Speaker 2: think that's really important that you can look and see.
27:26
Speaker 1: Yeah, most definitely definitely, and I think it's and you
27:32
Speaker 1: tried to get it out obviously on lots of different
27:34
Speaker 1: platforms because as we both know that there are there
27:37
Speaker 1: are so many people with hirsh Brungs who just sort
27:42
Speaker 1: of I mean they contact you, they contact me as well,
27:45
Speaker 1: just sort of randomly saying, oh, I didn't realize this
27:49
Speaker 1: was the thing. I thought I was the you know,
27:50
Speaker 1: I didn't. I knew I wasn't the only person with
27:52
Speaker 1: this condition, but I didn't know anyone else with it,
27:57
Speaker 1: and now I do, and now there's a now there's
27:59
Speaker 1: a community with it and a website and all sorts,
28:02
Speaker 1: which is fantastic.
28:04
Speaker 2: I think that's great. I mean I've literally got a
28:05
Speaker 2: message with someone who messaged me yesterday and said, I've
28:08
Speaker 2: literally never seen anyone talk about high Springs disease online
28:11
Speaker 2: so far, and that just shows that we feel like
28:13
Speaker 2: we're in the bubble where we talk about it every day,
28:15
Speaker 2: but there are people that don't. And I think that's
28:17
Speaker 2: really helpful to know that you know that it's reaching people.
28:23
Speaker 2: So yeah, I'm really helpful.
28:24
Speaker 1: Brilliant. No, that's fantastic, and long way that that continued,
28:28
Speaker 1: because I think it's as I said before, I think
28:31
Speaker 1: it's a fantastic resource, and I think it's it's something
28:35
Speaker 1: that you know, even if I know you said you've
28:37
Speaker 1: got sixty four things to add to it, even if
28:41
Speaker 1: it was just left as it is now and nothing
28:44
Speaker 1: was added to it, it's still brilliant resource and up
28:48
Speaker 1: for all the time. And I think something like that
28:51
Speaker 1: is so. I mean, again, the amount of messages and
28:55
Speaker 1: the amount of views you've got showed just how needed
28:58
Speaker 1: it was, even though there are other websites out there,
29:01
Speaker 1: but it just shows that there was a real need
29:04
Speaker 1: for it.
29:05
Speaker 2: Yeah, I think so too. I think there's just a
29:07
Speaker 2: bit of a gap where we need it, that's all.
29:12
Speaker 2: But yeah, I'm really grateful that it's had the reception
29:15
Speaker 2: that it's had so now I didn't need it to
29:17
Speaker 2: be picked up on a wider press scale. That's my aim.
29:21
Speaker 2: And to also get some of the companies that are
29:23
Speaker 2: involved in supplying washout equipment, because that's I mean, that's
29:26
Speaker 2: a prescription basis, but the stone equipment as well, be
29:29
Speaker 2: really helpful for that to be shared wader. So that's
29:32
Speaker 2: my sort of next name is one to keep adding
29:34
Speaker 2: to website, one to keep raising awareness of it. In
29:37
Speaker 2: the Hirshbungs experience and then get it into hospital so
29:41
Speaker 2: that information is shared and go from there.
29:43
Speaker 1: Really fantastic. Well, I'd wish you all the luck with that,
29:47
Speaker 1: and obviously we'll do I'll do everything I can to
29:51
Speaker 1: help promote that if I if I can add some
29:54
Speaker 1: more stuff to it, or add some more podcast episodes.
29:56
Speaker 1: I've got plenty more UK people who want to come on. So, so yes,
30:01
Speaker 1: you'll you'll have a raft of emails from me very
30:04
Speaker 1: soon going.
30:05
Speaker 2: I like them, I'm adding them. That's what that's what
30:07
Speaker 2: we need. Hear.
30:08
Speaker 1: Fantastick. Now, another part that we wanted to mention. I
30:14
Speaker 1: guess your whole reason for setting up the Hirshbrungs website
30:21
Speaker 1: is your son Freddie. Now, we did part one, I
30:25
Speaker 1: think it does six six seven months ago something like that,
30:27
Speaker 1: maybe a little bit longer, but we talked about.
30:30
Speaker 2: Remember when that was Tom, like.
30:32
Speaker 1: It was episode forty one. I don't don't don't ask
30:36
Speaker 1: me why I know that off the top of my head,
30:37
Speaker 1: but I just do. And this is seventy seven, so
30:42
Speaker 1: thirty six episodes ago. However many weeks and months that is.
30:47
Speaker 1: So we talked about his initial diagnosis. We talked about
30:52
Speaker 1: all of your thoughts and feelings, and again, if people
30:55
Speaker 1: haven't heard that, please go back check that out. Really
30:58
Speaker 1: good episode, and he wants to just just share a
31:01
Speaker 1: little update now that he's one year of age.
31:06
Speaker 2: He is, he's just well not long ago turned one.
31:11
Speaker 2: I mean that just feels like a lifetime ago. And
31:14
Speaker 2: last spoke to you, it was like he was five
31:16
Speaker 2: months old and that just and he'd had his stonema
31:20
Speaker 2: and we were like newly into the stonma world as well,
31:23
Speaker 2: so that was just wow. But no, we're a year
31:27
Speaker 2: a year into it. I think Freddy's doing really well.
31:32
Speaker 2: I mean he I'm so grateful. He is a happy, chatty,
31:37
Speaker 2: noisy little boy who just smiles all day long, which
31:42
Speaker 2: is fantastic. The stoner as well has been brilliant. I mean,
31:48
Speaker 2: apart from the instances we've had. We had a horrible
31:51
Speaker 2: episode of neurovirus in December that landed him in the
31:54
Speaker 2: hospital for quite a while, both in our local and
31:57
Speaker 2: at Older Hay. Then he's had a run of illnesses
32:02
Speaker 2: from February to March and once in April as well,
32:05
Speaker 2: So I think, yeah, lots of lessons learned. I think
32:10
Speaker 2: It's one of those where it's like every time you
32:12
Speaker 2: encounter a scenario, you learn how to deal with it better.
32:15
Speaker 2: I think that's that's been interesting this first year. But
32:22
Speaker 2: he's really happy, I mean, which is great he is.
32:26
Speaker 2: In terms of medical side of things, we are awaiting
32:30
Speaker 2: an appointment to put a date in the diary for
32:32
Speaker 2: his next surgery. So I don't know if anyone if
32:36
Speaker 2: you go back and listen to the episode, you can
32:37
Speaker 2: hear me talk about what happened. But essentially Freddy was
32:41
Speaker 2: having washouts at home until he was four months he
32:44
Speaker 2: went in for pull through surgery. It was sort of expected,
32:47
Speaker 2: I mean unset, what sort of unsaid expected that he
32:50
Speaker 2: was going to have short segment Hirshbungs disease because of
32:53
Speaker 2: the way he presented, and it turned out once they
32:56
Speaker 2: got in there that he actually has long segment Hirshbungs disease.
33:00
Speaker 2: He had really large portion of his large intestine removed,
33:03
Speaker 2: leaving ten centimeters and they still don't know if this
33:07
Speaker 2: ten centimeters is all transition zone. So for people that
33:12
Speaker 2: don't know, transition zone is where you have both ganglionic
33:16
Speaker 2: cells and a ganglonic cells at the same time, so
33:21
Speaker 2: they reached transition zone remove some of it, but they
33:24
Speaker 2: decided instead of continue to pull through to do a
33:29
Speaker 2: stage procedure, which is putting a stoner in and iliostomy,
33:32
Speaker 2: they actually suspended his some of his small intestine and
33:36
Speaker 2: large what was left of his large intestine in a
33:38
Speaker 2: mucous fistula and iconic blowhole. So he's got three stormers
33:42
Speaker 2: with the aim to make a plan further on. So
33:46
Speaker 2: that was where we were left. We had appointment in
33:48
Speaker 2: January to discuss that and we talked about what that
33:51
Speaker 2: looks like. And the plan going forward is to go
33:55
Speaker 2: in do the biopsies on that ten centimeters and beyond
33:58
Speaker 2: if needed, into his small intent in. If there's only
34:02
Speaker 2: a very small bit left that's transition zone, they will
34:05
Speaker 2: take that away and carry on and do the pull
34:08
Speaker 2: through connection at his rectum with what large intestine is left.
34:13
Speaker 2: If for any reason that's difficult, either because it doesn't
34:18
Speaker 2: work right or because his he needs all of that
34:24
Speaker 2: colon removing and then maybe even some small intestine. There
34:28
Speaker 2: will be various other things they do, which technically are
34:30
Speaker 2: called things like jpouch or do hamil procedure, depending on
34:33
Speaker 2: what they decide in the moment. Potentially we discussed the
34:39
Speaker 2: idea of having a permanent stoma. I mean that might
34:42
Speaker 2: not be set at that surgery, but we'll we have
34:45
Speaker 2: to see on the day essentially, which is which is
34:46
Speaker 2: quite a daunting thing going into surgery knowing that potentially
34:49
Speaker 2: we have to make a quite a big decision in
34:51
Speaker 2: that moment, and I think for the surgeon as well,
34:53
Speaker 2: a bit quite daunting experience. So that is the plan.
34:59
Speaker 2: They'll weave his stone and potentially may move it. So
35:03
Speaker 2: it might mean in revision his home is currently prolapsed,
35:06
Speaker 2: not not dramatically, but it is at the moment, so
35:09
Speaker 2: I mean, and they may want to look at that
35:10
Speaker 2: when they go in with the plan that once we
35:15
Speaker 2: know what it looks like, potentially reversal in another year,
35:18
Speaker 2: so when he's two, or we make the decision to
35:22
Speaker 2: leave the storma for longer and then reverse at a
35:24
Speaker 2: later date. But they probably will try and avoid surgery
35:26
Speaker 2: between three and eleven because it's a really tricky age
35:29
Speaker 2: with understanding what's happening and movement of children, and yeah,
35:36
Speaker 2: unless unless it's emergent, I think they're going to try
35:39
Speaker 2: and leave those years. So it's really like before school
35:43
Speaker 2: or sort of secondary school age is really where we're
35:45
Speaker 2: looking at. So we don't know yet. We'll see what
35:47
Speaker 2: happens at the next surgery. But whether he's long segment
35:52
Speaker 2: or total chronic hush buns, I don't know. But the
35:55
Speaker 2: transition zonely intrigues me. I've done a lot of research
35:57
Speaker 2: on that because that's interesting. But that's where we sit
36:01
Speaker 2: right now in terms of the medical side of thing.
36:02
Speaker 2: So I'm hopeful we'll get a date for surgery this
36:04
Speaker 2: summer because i'd like to get on with it Nowhere
36:08
Speaker 2: in January, I was like, oh, I'm not sure, I said.
36:10
Speaker 2: I actually said in the appointment, I'm not sure about
36:12
Speaker 2: the next surgery, And I mean, reflecting now, I should
36:15
Speaker 2: have said yes, because I didn't know it's going to
36:17
Speaker 2: take so long to get to the next appointment to
36:18
Speaker 2: get the day. You know, I would have been happy
36:20
Speaker 2: with it happening this week. Really, I just want to
36:23
Speaker 2: get on with it now. But yeah, back in January,
36:25
Speaker 2: we were so we weren't sure. We were hesitant, you know,
36:29
Speaker 2: because it's such a big decision to make. But yeah,
36:35
Speaker 2: we've got a plan. So that's the plan. They're going
36:38
Speaker 2: to go in and do that next step and then
36:42
Speaker 2: we'll have recovery, probably have another year and then go
36:45
Speaker 2: potentially a reversal and see how that goes. But we'll see.
36:50
Speaker 1: It's good to know that there is a planning place
36:53
Speaker 1: because I think again, and that's something that I think
36:56
Speaker 1: worries a lot of people where you kind of go, well,
36:58
Speaker 1: we could do this, or we could do this, we
36:59
Speaker 1: could do this, and you've got five, six, seven options.
37:03
Speaker 1: So to have a and I know there are still
37:05
Speaker 1: options to be ticked off or crossed off, yeah with Freddy,
37:11
Speaker 1: but to have a Okay, we're going to look at
37:15
Speaker 1: this and then this and this is how we're going
37:17
Speaker 1: to do it. I think. I guess that's possibly more comforting.
37:22
Speaker 2: Yeah, I mean, I'm pretty the next surge, it has
37:28
Speaker 2: to happen. The piece of large intestine he has that's
37:30
Speaker 2: just not connected to anything other than his his his
37:34
Speaker 2: stomach needs to be removed. It's got to do something
37:39
Speaker 2: with it. I mean, it's a risk for entroclitis now
37:41
Speaker 2: diversion glitis, and so something's got to happen. So it's
37:47
Speaker 2: good and they want to do one surgery in his
37:49
Speaker 2: pelvest rather than do multiple surgeries. The more you go in,
37:52
Speaker 2: the more scar tissue you create, the more likelihood you've
37:55
Speaker 2: got damaging the other organs that exist there. And I
37:57
Speaker 2: think the plan is if they can do that one,
37:59
Speaker 2: we can go from there with a plan. At the
38:01
Speaker 2: same time there will remove his appendix because if his
38:03
Speaker 2: appendix is down and near his rectum, if it does
38:06
Speaker 2: ever become inflamed, they've got to go down there to
38:08
Speaker 2: get it, which is tricky. So that's going to come
38:10
Speaker 2: out as well. And yeah, I just think so it's
38:14
Speaker 2: nice to have a plan. As always with the NHS,
38:17
Speaker 2: I think I'll be happy if it was a bit
38:18
Speaker 2: more speedier. It takes a lot of chasing. They're incredibly busy,
38:24
Speaker 2: and that's no fault but anybody else, anybody's fault at all.
38:29
Speaker 2: It's just when you're the one sitting on this side,
38:31
Speaker 2: imagine all these people waiting. It's just incredibly frustrating for everybody,
38:36
Speaker 2: probably on both sides of the table.
38:39
Speaker 1: So yeah, yeah, I think you're right. It's just overworked,
38:43
Speaker 1: understaffed from what I hear and what I think again,
38:46
Speaker 1: from what we all know, I don't think I'll be
38:48
Speaker 1: a genius to work to work that out, but it
38:51
Speaker 1: is it's just it is incredibly and I think you're right.
38:55
Speaker 1: It's frustration on both sides, isn't it. And I don't
38:59
Speaker 1: think there's an unwillingness to crack on with stuff. It's
39:04
Speaker 1: just they've got so much to do.
39:06
Speaker 2: I agree completely. I agree, And the Hirshbrngs disease is
39:09
Speaker 2: a particular condition and it takes experience and practice and
39:19
Speaker 2: multiple We're going to have two consultants and you know,
39:23
Speaker 2: a senior registrar who's expertise is Hirshbrungs. That means, you know,
39:27
Speaker 2: a lot of time and a lot of space to
39:30
Speaker 2: do it. It's going to be a four day surgery.
39:32
Speaker 2: I think, so yeah, it's I mean, I'm looking forward
39:36
Speaker 2: to it now, which sounds weird looking forward to surgery,
39:38
Speaker 2: but I think I'm looking forward to the next stage
39:39
Speaker 2: so we know what the next plan is. But equally,
39:43
Speaker 2: I think we felt like that because we'd had so
39:45
Speaker 2: much run of illnesses that we just want to get
39:47
Speaker 2: to the next stage, closer to stona reversal. Because Freddy's
39:50
Speaker 2: problem with illness and virus is is dehydration. Because he
39:54
Speaker 2: has an iliostomy, he has a high output anyway, which
39:57
Speaker 2: is control with medication that some days work, some days
40:00
Speaker 2: it doesn't work. And I think the chance he all
40:03
Speaker 2: it takes is for like a little thing to knock
40:05
Speaker 2: him off and need to go back in. I mean,
40:07
Speaker 2: and we're so lucky we have the amazing hospital that
40:10
Speaker 2: we can go to where we know we you know,
40:14
Speaker 2: the more you do it, the more you practice, you
40:16
Speaker 2: know what to say, you know, explain it. You get closer,
40:20
Speaker 2: you get you know, get dealt with quicker, and it
40:21
Speaker 2: just makes things easier. And I know what I'm taking
40:24
Speaker 2: to hospital. I know I know what to say when
40:26
Speaker 2: I get there to explain what's going on. I know
40:29
Speaker 2: how to ask to see the surgeons because it's their
40:33
Speaker 2: review that we need, and I just know I know
40:36
Speaker 2: how to deal with that. It also has highlighted to
40:39
Speaker 2: us that our local hospital, despite being they're all fantastic,
40:45
Speaker 2: they don't always have the same understanding and level of
40:50
Speaker 2: knowledge about Hirshbrung's disease than they do at the specialist
40:54
Speaker 2: pediatric surgical centers. And I think that was something for
40:58
Speaker 2: us in knowing what do we go to our local
41:01
Speaker 2: hostal which point do we go to the surgical center
41:05
Speaker 2: and knowing that for ourselves rather than going somewhere being
41:07
Speaker 2: frustrated that that's been helpful for us to know that.
41:13
Speaker 2: So it's all learning all the way through. I know
41:15
Speaker 2: what I'm doing now. I had to pack for the
41:16
Speaker 2: hospital and I had to keep a bag. I know,
41:18
Speaker 2: I know what to take all those things that just
41:20
Speaker 2: sort of come come in. We're a regular on the ward, unfortunately.
41:27
Speaker 2: I remember going in once no when Freddie any surgery,
41:30
Speaker 2: and one of the nurse said to me, well, I've
41:32
Speaker 2: retreated to Freddy before, like we know our regulars. I said,
41:35
Speaker 2: please don't say that we've been here twice. That's not regular.
41:39
Speaker 2: And then now we are officially regulars. But no, I think, yeah,
41:45
Speaker 2: it's I feel incredibly lucky that we are under the
41:49
Speaker 2: hospital we are under because they have clear plans and
41:54
Speaker 2: protocols for dealing with Hrshebrugs disease. Not not that I've
41:57
Speaker 2: seen those, but I know because of the way things
41:59
Speaker 2: happen in same order every single time we go that
42:02
Speaker 2: it feels reassuring.
42:04
Speaker 1: Yeah, definitely, And I know one of those times that
42:07
Speaker 1: you were in hospital was over the HIRSHBRNGS conference. Unfortunately,
42:12
Speaker 1: you were able to make it down for a little bit,
42:17
Speaker 1: although we did meet each other very briefly.
42:21
Speaker 2: YEA, so good. I mean the day before Freddie was
42:25
Speaker 2: not quite the problem with children with hirshbrungs, and from
42:29
Speaker 2: what I hear from other families, it's not just my
42:31
Speaker 2: experience with Freddy is that they look well even when
42:36
Speaker 2: they're not, and they can present clinically well in terms
42:40
Speaker 2: of what their SAT say, their blood tests and things
42:44
Speaker 2: like that. Often you as a parent, you see the
42:49
Speaker 2: change in your child and you know they're not well
42:51
Speaker 2: before those things start telling you. So it can be
42:57
Speaker 2: really frustrating when you're on that side of it where
43:00
Speaker 2: you know something's not right with your child, but they're
43:04
Speaker 2: not clinically unwell enough yet that is like a real
43:08
Speaker 2: and I think that's why. And our doctors are amazing
43:11
Speaker 2: at saying this. If it feels wrong to you, then
43:13
Speaker 2: come and see us or let us know, because I
43:16
Speaker 2: think that's really like you, as a parent, of the
43:20
Speaker 2: writing stinct about your child if you feel like something's off.
43:24
Speaker 2: But the night before we went to the PROG to
43:31
Speaker 2: the conference, he wasn't quite right all that day and
43:35
Speaker 2: I was going, I don't know if I'm going to
43:36
Speaker 2: be able to go with me and Freddy were coming,
43:38
Speaker 2: I was like, I'm not sure. I like, if he's
43:39
Speaker 2: going to be well enough, like I'm really good to
43:41
Speaker 2: if I can't go. And then it was like six
43:43
Speaker 2: pm and he was unwell and I was like, right,
43:44
Speaker 2: we're getting in the car going to alder Hey, oh
43:47
Speaker 2: what happens to be there at the same time as
43:49
Speaker 2: the conference. So I did pop over for the afternoon.
43:51
Speaker 2: I caught it with some friends that I've made in
43:53
Speaker 2: the community which have been life saving for me. I
43:57
Speaker 2: met you, Tom, I met Zoe. She came sor on
44:00
Speaker 2: the ward afterwards, which was amazing, and I saw like
44:03
Speaker 2: the Q and A and I saw some of the chat,
44:05
Speaker 2: so that was really lovely. I'm just glad I didn't
44:08
Speaker 2: do the whole thing, but yeah.
44:09
Speaker 1: Well hopefully down the line. I really I genuinely. I
44:15
Speaker 1: know we talked about the website and everything as well,
44:18
Speaker 1: but I really think I don't know whether it would
44:20
Speaker 1: be a yearly thing. I don't want to whether it'd
44:22
Speaker 1: be a buyer neal. I don't know whether it be
44:24
Speaker 1: take place in a hospital or something. But the aim,
44:29
Speaker 1: as part of why I said up the discord as well,
44:32
Speaker 1: is the aim is to get something along those lines
44:37
Speaker 1: fairly regularly, because I think I think, I think it's wanted,
44:43
Speaker 1: and I think, you know, there's so many people craving community,
44:48
Speaker 1: craving info, you know, craving support. Hence why your your
44:54
Speaker 1: website is is incredibly important that I think it wouldn't
45:00
Speaker 1: be out the realms. I know Ellie is wanting to
45:04
Speaker 1: do the Buddy system. I know she's working hard on that,
45:09
Speaker 1: and I think it's Yeah, I think it's it's something
45:13
Speaker 1: that people want.
45:15
Speaker 2: I think so too, And I think I hope that
45:17
Speaker 2: we get to do it again. And I hope and
45:21
Speaker 2: I I'm sure we will do lots of social mediups,
45:24
Speaker 2: but put I really enjoyed the medical involvement in that
45:29
Speaker 2: because I think hushbungs disease, it is a parent and
45:34
Speaker 2: child and adults with hashbrog disease. There's that part, but
45:39
Speaker 2: there's also the medical professionals who know and have seen
45:43
Speaker 2: hirshbrongs disease, and I think their input is really valuable
45:46
Speaker 2: and important, and they don't have all the answers. And
45:49
Speaker 2: I think sometimes there may be people feel it there,
45:52
Speaker 2: you know, maybe expect them to have and they don't.
45:55
Speaker 2: I think it's really helpful hearing that, hearing from them
45:59
Speaker 2: discuss it, having their involvement, because yeah, I just really
46:04
Speaker 2: think that's that's super helpful. So I really hope that
46:07
Speaker 2: we have another conference like that soon. I hope that
46:09
Speaker 2: that that takes place, and it's just nice to see
46:13
Speaker 2: other parents and hear about them and to talk about
46:17
Speaker 2: to talk about the whole experience. So I think, I
46:20
Speaker 2: hope you get to do that again.
46:22
Speaker 1: I did you, and if I've got anything to do
46:25
Speaker 1: with it, we will do hopefully, hopefully we will. But
46:30
Speaker 1: now this has been an excellent catch up. Really really
46:34
Speaker 1: enjoyed having you on, listening to the website, listening to
46:39
Speaker 1: to how Freddie's getting on, and obviously send him all
46:44
Speaker 1: the very best as wellstairs.
46:48
Speaker 2: Chatting away doing making noises.
46:50
Speaker 1: So it's so goodly Such a happy little chap, isn't he.
46:54
Speaker 2: He is so happy. I mean, he wasn't happy that
46:57
Speaker 2: they're the comrades. I did bring him down for a
46:58
Speaker 2: little bit. We went for a walk and I came down.
47:01
Speaker 2: He wasn't very happy, but he was really poorly there.
47:03
Speaker 2: But I mean, on the whole, when he's well, he's
47:05
Speaker 2: such a happy, smiley and That's one of the things
47:09
Speaker 2: I'll say, like for us a parents, it's so frustrating
47:12
Speaker 2: when tomorre medical professional and not those that are expects
47:16
Speaker 2: with Hirshbrung's. But we'll walk in and go, oh, it
47:18
Speaker 2: looks alert and well and I'll go, yeah, but he's
47:21
Speaker 2: not because he's different to have his day to day
47:24
Speaker 2: And I think that's that's all I say to parents
47:26
Speaker 2: is you know your child best. You know when something's
47:28
Speaker 2: not right, and that's why it's really it's really with you.
47:35
Speaker 2: You what you know, what you're talking about, and it's
47:38
Speaker 2: important that you get listened to. So push if you
47:40
Speaker 2: need to help you need, because you know your child best.
47:45
Speaker 1: Absolutely, I'd always I'd always advocate for parental instinct. It's
47:49
Speaker 1: saved my life, so I will well, I will forever
47:53
Speaker 1: be indebted to parental instinct and you have my full
47:55
Speaker 1: support on that all the time. But no, thank you,
47:59
Speaker 1: thank you so much, so much for coming on and
48:01
Speaker 1: just just very quickly for those that didn't didn't hear
48:04
Speaker 1: part one. If you haven't, please go back and listen
48:07
Speaker 1: to it. It's really good. For those who haven't heard it,
48:11
Speaker 1: where can people find and follow you?
48:13
Speaker 2: Yeah, I'm at Live with George and you're on Instagram
48:16
Speaker 2: and TikTok and I'm it's Hushbrings Disease dot co dot UK.
48:22
Speaker 2: That's where you'll find the website and all the info
48:24
Speaker 2: and you'll find links to everybody that talks about Hirshbruings
48:27
Speaker 2: and all of that kind of thing.
48:28
Speaker 1: So yeah, wonderful. Thank you so much for coming on.
48:32
Speaker 2: Thank you for having me Tom, it was a pleasure.
48:38
Speaker 1: Thank you for listening to the podcast. Find us on
48:41
Speaker 1: Instagram Tom's Underscore Hirshbrungs Underscore Podcast. Listen to previous episodes
48:47
Speaker 1: on Spotify by searching Tom's Hirshbrungs Podcasts.