Latest / Tom's Hirschsprung's Podcast / Episode 4 - Interview with Louisa and Andrew Shapton

Transcript

Episode 4 - Interview with Louisa and Andrew Shapton · Tom's Hirschsprung's Podcast

0:05
You are listening to Tom's Hirshbrung's Podcast, where I provide a look into the
0:09
remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Welcome to
0:40
episode four of Tom's Hirshprung's Podcast, where I am joined by one of the
0:45
founding members of the podcast, Louisa Shapton and her dad Andrew Shapton. Welcome
0:50
to the podcast. Thank you very much, Thank you Tom. Now,
0:57
thank you. Now. Nobody apart from from us three will know this,
1:03
but between between us and another personal Carla, so four of us we discussed
1:11
the podcast regularly. We discussed various ideas about how we can grow this,
1:18
get it out to more people to know about Hirshbrung's disease, and you,
1:23
Louis, have been instrumental in pushing this forward, and hopefully in the not
1:29
too distant future, we will have some more exciting news about what we're doing
1:33
outside the podcast as well and various social media aspects Facebook groups, et cetera,
1:40
et cetera. But for today, I have Andrew and Luiz Shapton and
1:46
we're going we are going to talk about Louisa your story with Hirshbrung's disease,
1:53
and then and your dad as well, to fill in the bits that are
1:57
very relevant to him, and the bits of you don't remember because you were
2:00
too young. So if we go straight from the beginning, and I'll start
2:07
with you Andrew, the the first diagnosis of Hirshprong's disease. Did you know
2:17
about the disease? Had you heard of Hirshprong's disease at all before Louis who
2:22
was diagnosed. So no, we'd not heard of it at all. And
2:29
to me, it was a I describe it as some people as just it's
2:32
like a boat from the blue. You know. You you have this beautiful
2:37
little daughter, bunks and baby, she's arrived. In our case, we
2:42
were shipped from one hospital fifty miles away to her to another hospital in the
2:49
capital of Wheels and she was undergoing a bunch of tests and we were told
2:53
at one o'clock in the morning that she had hirsbruns and again what's that?
3:00
Yeah? And and we we were lucky enough to be to be seen by
3:06
one of the one of the leading consultants in the UK for hersh bruns arm
3:10
and he he very kindly sat down and explained what it was in quite some
3:17
detail. Uh And and to be fair, you know, we we've got
3:22
a very good understanding of what it was, not why it was, not
3:25
what it caused it, because at that that point, I think we were
3:29
still still quite shell shocked, both Mum and I. You were very very
3:32
tired, We were very bewildered. And you know, we we kind of
3:42
a one and two o'clock in the morning because he sat down and spoke with
3:45
us a hapless thing we've never heard of before, what it caused. But
3:53
beyond that, we hadn't We had no further information at all, no idea
3:59
it's and from the just through doing the research with hirshprngs disease just for the
4:04
podcast, there have been plenty of studies on it. And one of the
4:14
things I found out which I thought was quite interesting, was that the so
4:19
the two people that the parents of the child that make that have the chromosomes
4:23
that make up hirshprungs disease. If I've explained that correctly, you have a
4:30
one in four chance of having a child with hirshprngs disease if you have the
4:34
mother and the father both have those those chromosomes, which makes absolute sense in
4:41
my case because I'm one of four and I was the unlucky one. So
4:46
do you have any brothers or sisters, Louisa, No, So I'm the
4:53
only child. So from what I understand, it was kind of obviously because
5:00
of the risk of me having it, that it was oh, because I
5:06
had it, that it was not in my parents' best in dress have another
5:12
child, which is understandable, I guess, but yeah, no, I'm
5:19
still an only child and forever will be fantastic. So you were you were
5:27
triply unlucky then to get hirsh Bruns very much. So, yeah, I
5:32
think from from our perspective as a as a dad, and speaking from mum
5:36
as well, we wanted to give the reason all our loving attention and care
5:44
because we knew she was going to need it. And also we spoke quite
5:47
some length to the medical staff, and we undertook something called genetic counseling,
5:54
which is explaining the kind of things that you've explained Tom, in terms of
5:59
the risks and the probabilities or possibilities, and we felt that it knowing what
6:05
we knew, then it was just not right to bring another child into the
6:10
world and with that risk, with that sort of damn please hanging over us.
6:16
I think I think we were right to do so. Other people may
6:20
not, but you know, I think you do what you need to do
6:25
within the best in your family. Yeah, very much. So each to
6:29
their own on that most definitely what I have two younger brothers and one older,
6:36
so I'm stuck right in the middle. It was the child with Hirshprings
6:42
disease. And I guess I haven't spoken to my parents about this. Actually,
6:46
it's probably something a podcast for them, but I guess they must have
6:51
had the fear of having having one child with Hirshprings disease, that you know,
7:01
potentially having another child with hirshprungs. But then there is that that twenty
7:06
five and but no, I totally totally totally understand where you're coming from with
7:17
that. And obviously having child with Hirshprungs disease takes takes a lot, a
7:25
lot out of you, I would imagine as well, so it does,
7:31
you know it. But beyond the endless visits back and forth hospitals, beyond
7:38
the additional work that comes with handling a cost to the bag, which you
7:43
know, we were under no illusions. It's something we were going to do.
7:47
You know, it's just an additional thing you have to care for to
7:51
bring up your your child. I think I think sometimes there's you there's a
7:58
sort of social aspect where you've got kind of explain to people, well,
8:01
you know this, this is our bouncing baby dater, isn't she lovely?
8:07
Oh, she's got this thing that you need to need to consider and don't
8:11
cuddle her too tight because she's got a coostomy bag on. Oh and why
8:16
is that so? I think if you're if your your child has got something
8:22
like diabetes or any other visible condition for example, it's easy to explain.
8:31
And there's a lot of I think stigma around coostomy bags and the internal plumbing.
8:39
The people are still a little bit wary, are still a little bit
8:43
afraid of and as as I'm sure the reason will allude to. You know,
8:48
we have no such fears in our family, you know, we we're
8:52
quite open about it. Yeah. No, that's fantastic. And I think
8:58
as well, something that's done in the very first episode is that science has
9:01
very much moved on in terms of things like sealth belts for for stonas and
9:13
colostomy bags and things like that have really have really come to the fore a
9:18
lot more, and people a lot more, maybe not so much open about
9:24
it, but definitely are aware a lot more. And I think, as
9:31
we alluded before had when where a child is diagnosed with hirshprungs, many many
9:39
people have no idea what Hirshprungs is. But again, in doing the research
9:45
for this, I've found that one in about one in five thousands, to
9:48
give or take, or one one per probably small town here in England have
9:54
Hirschbrng's disease, which is quite common I would think, not in a diabetes
10:03
or an asthma or whatever, but in terms of rare diseases, it's probably
10:07
one of the more common ones. I would say, It's odd, isn't
10:09
it? And yet you you know you do. You do a survey across
10:16
the whole of the UK, and probably apart from those in one in five
10:20
and they are immediate families and friends, there's probably zero knowledge. I think
10:26
it's one of those things that you only know about if you know someone or
10:31
are related to someone that has it, rather than you know asthma, diabetes,
10:37
epilepsy. You know, everyone knows what they are. Maybe they don't
10:41
understand them, but they know what they are. Definitely heard of them,
10:45
Yeah, definitely. I think the other thing as well, I was going
10:50
to ask, was you said you had to explain her sprungs and to very
10:56
different people, and my parents will know that experience. I've had that experience,
11:01
And Louise, I'm sure you've had that experience where you've had to explain
11:03
this that the other two people? Did you ever before? She's getting involved
11:11
with a lot of the Facebook groups And Louisa, did you know of anybody
11:16
growing up that had hirshbrungs or was it something that you thought you only had?
11:22
I think I knew that I wasn't the only one with it. I
11:31
my parents had said about how on the ward I was on in Cardiff Heath
11:37
Hospital, there was another little boy there and he had hirshbruns and I think
11:46
my parents spent time talking to his parents as well, And yeah, so
11:52
I knew that it wasn't just me kind of situation. It wasn't you know.
12:01
You hear of these cases of illnesses and there's like three people in the
12:07
world with it. I completely understood. It wasn't that kind of situation.
12:11
But it also wasn't a situation where if I said hoshbruns, then someone would
12:18
say, oh, I know someone with that, or they knew what it
12:22
was. It was very like I think the first time we spoke, I
12:26
started welding up because it was I'm twenty two now, and this is the
12:31
first time that I have actually knowingly had a conversation with someone who has hoshe
12:39
or who has had or has hosh runs. And it's taken me twenty two
12:46
years to find someone else. Yeah, I think it took you a shorter
12:52
time than it took me. It took us twenty five I until I was
12:58
teaching somebody actually in my career as a teacher, actually teaching somebody who has
13:07
hirshbrums. But my mom's good friends with his mom, and yeah, so
13:13
yeah, it took me until about twenty five. So you did that a
13:16
lot earlier than I have. Yeah, but yeah, it is quite unique
13:22
in that sense, and it can, you know, in honesty, it
13:28
can be quite isolating in a bit confusing I found growing up. You know,
13:33
it can feel a bit like I don't want to put a dampener on
13:37
things, but it is very you know, how do you explain this?
13:41
And as we said, it's you know, I was born in two thousand
13:45
and one, so it's growing up when science maybe wasn't as developed as it
13:52
was now. It was very much a taboo around. Can I talk about
13:56
it? Will people understand it wasn't just a known thing? I guess,
14:05
yeah, but yeah, very much so. I mean, I think over
14:11
the years, I don't know how it's been for the review, but over
14:15
the years I've sort of got more succinct with my answers. If anybody ever
14:18
looks at my records and goes, you have hirshbrungs and what's that? I
14:24
tend to beforehand I would go into detail that I got this and that,
14:30
and this happens and this intestine gets chopped and that and just whatever and blah
14:33
blah blah. But now it's more just yeah, my stomach cuts sometimes and
14:39
just move on. So, yeah, I tend to find did you find
14:46
that, Andrew throw if you had to explain hirshprungs to whether it's schools or
14:52
teachers or whoever, did you find that? Was it? Long winded answers
15:01
that you gave and tried to get loads of information or was it sort of
15:03
like, right, this is it, I've got it, I've got it
15:05
down and think and go. I it was. It was very much a
15:13
long winded answer because and to be honest, it still is. You know,
15:18
if someone says not not that they do anymore because Louise is kind of
15:22
taking them out. But I think if someone were to ask you, now,
15:26
you know what is hirsh bones, irrespective of if it's in the context
15:33
of Louisa or not, I probably still give the same answer. And I'm
15:37
like that because I'm a team that people understand as much as possible about it.
15:43
And in these it was very in school so they you know, she
15:52
should be able to be given at other of the waal slack if she did
15:56
need the lou or she didn't need the lou or whatever, so that the
16:00
teachers would understand. Now I'm more in an educational sense, right, people
16:07
want to know what it is, Okay, I'll tell you. I will
16:10
keep talking about it until you tell me to stop. Yeah. Yeah,
16:14
so you get more than the last graphic minutia detail about this. Yeah,
16:21
No, that's good. It's good. And I think it's been touched on
16:23
before. Yeah, time and science has moved on. So the explanation that
16:30
I mean, the condition of itself hasn't changed. It's still you have your
16:34
short segment and your long segment, so that hasn't changed in a sense.
16:41
But I certainly felt in sort of the thirty two as I am now thirty
16:47
two years i've had it, my explanation has changed from you know, going
16:55
very much into sort of I've got this scar and that scar and blah blah
16:57
blah blah blah. Has Yeah, your explanation changed, and you said you
17:04
go into and go into detail. But has it changed over the years or
17:08
is it still very much the same explanation. I think it's very much the
17:14
same, simply because I think what I'm explaining is the causes of the condition
17:27
rather than the science behind it. And let me try and put that in
17:32
a different way. Then the causes of it are clearly genetic, Okay,
17:37
So you know that I think is whether science has moved on in terms of
17:40
finding more information about that angle. But the the impact that then has on
17:48
a person who's about to be born, and they will they will pop into
17:55
the world with this condition that that to me is still the same. Yeah,
17:59
the act of its still the same. You know, there's there's a
18:00
long segment, of the short segment, there's the pothos is the reversals,
18:06
there's the scars. Well, that's all the same, I think, because
18:10
science won't change that until science comes up with a bunch of procedures that change.
18:15
It's it's, as you say, Tom, the research that's changed and
18:18
the knowledge has changed, but until the procedures changed, the impact is still
18:25
the same. And that's what I am. That's what I tried to impart
18:27
in people. Yeah, for sure, for sure. Another part that I
18:33
wanted to talk about is loser. Obviously we talked we've talked before, and
18:37
we talked through the WHATSEP group and what have you. And you talked about
18:41
dancing being very very important to you. When did you start dancing? Yeah,
18:48
So I started dance. I think I was about three or four,
18:55
and I started with ballet, and then I went on to tap down ants,
19:00
and then maybe ten I went on to jazz, and I did a
19:04
few other things. And yeah, I think for up until maybe my mid
19:12
teens, I was doing dance. Yeah, yeah, and that and how
19:22
did because it was Hirshbruns never stopped you from dancing as far as as far
19:29
as I'm aware with what you told me. And one of the key parts
19:36
from what I wanted to start this podcast is to give people that not hope,
19:44
not hope as such, but tell to tell people, actually, you
19:47
can go and do what you want to do, whether it be sports,
19:53
or whether it be arts, whether it be whatever, construction, whatever it
19:57
might be. But obviously it does come with, you know, the occasional
20:03
challenges. But from what you told me in the past, you know,
20:07
dancing, never you never stopped stopped dancing. It never hers proms, never
20:12
ever stopped you doing doing whatever you wanted to do. Is that right?
20:18
Yeah? Absolutely, I think from that perspective it was. Yes. I
20:26
faced additional challenges because my stomach vessels weren't as strong as everyone else's. And
20:34
it wasn't until after I left dance that I realized, well, it's because
20:41
I've had multiple surgeries on my stomach. But apart from that, I I
20:48
would turn up to dance three four times a week. I did exams,
20:52
I passed, I made so many friends. You know, it didn't stop
20:57
me, and I don't I almost don't consider myself to have had hushbruns,
21:07
like even now unless when I go into hospital, unless it's you know,
21:11
stomach related and they say, like any other medical conditions I should know about.
21:18
I read you're wrongly. I don't say hushbruns because I often forget.
21:26
And I say that in a positive sense that it's it hasn't held me back,
21:34
you know, it doesn't. I'm fortunate enough that it doesn't impact my
21:40
day to day life and if it does that I've navigated around it. I've
21:45
embraced it, and it's not detrimental toe my lifestyle at all. And I
21:53
am very grateful for that and for you know, the the medical staff and
22:03
everyone who supported me to that point. And mister Simon had that in Cardiff,
22:10
who I think he's retired now, but you know it was well if
22:17
it wasn't for him, I wouldn't be here, so you know, but
22:22
yeah, absolutely, like I completely appreciate that in the at the time,
22:30
you know, it must have been so frightening for my family, but there
22:36
is you know, to all the parents out there, there is no reason
22:41
that your child can't go on to succeed and be on a podcast about hersh
22:47
friends. You know, it's it's not a be all, end all situation.
22:56
That's really interesting that you mentioned an absolutely you absolutely right with that as
23:00
well. You can achieve. You can achieve what you want to achieve,
23:04
and it sounds a bit cliche, but you definitely can. It shouldn't ever
23:11
ever hold you back. It's interesting you said about almost forgetting that you have
23:18
hirs bronx when when they say if you have any other medical conditions, again,
23:23
if you're anything like me and my condition, you have a folder that's
23:27
about three hundred pages long and it has everything in the world in it,
23:33
and it's just a quick because when I went to hospital, I went to
23:38
Great Elementary Hospital in London, and I could always tell when I was next
23:42
because they would wheel the trolleys through with all of the folders and mine was
23:45
always the biggest, so I always knew when I was next. But I
23:52
imagine Andrew as well, you probably had to you touched on before you had
24:00
that to sort of explain various conditions. But it never never stopped Louisa doing
24:07
anything growing up at all. No, I think quite the reverse. I
24:14
think what struck me as how Louisa was I think again to use a cliche.
24:22
You know, you always think your child is the best in the world,
24:26
and yeah, Louisa is. But I think we were in hospital for
24:36
one of the checkups and she was she was asked to sort of she must
24:41
have been about seven six or seven, and she was asked to sort of
24:48
hoist herself up onto the hospital bed, and she did so, and there
24:52
was a big clunk on the bed and mister Huddart, the surgeon who saved
25:00
their life, look at her and said, do you mind if I get
25:03
one of my colleagues to come and look at her. No, not at
25:07
all. Apparently, if if you have hirshbruns, you know you have a
25:12
really slimm chance of becoming quite beefy and you know, meat deep. And
25:17
what he said was a lot a lot of for a young kids with hirsh
25:19
bruns tend to be somewhat because they've got issues obviously with it, know,
25:25
with ingesting and digesting proteins and goodness from food because of the short length of
25:30
the bowel, et cetera. That they have the potential for not to be
25:36
as beef and meaty as other kids. And yet us bucking the trend so
25:44
you know that struck me as well. If she's bucking the trend, then
25:51
she can cheeve whatever she wants. You know, she can be whatever she
25:53
wants, she can go wherever she wants. So it's never stopped her.
25:59
And I think it's me. It's me subconsciously more of a fighter. Yeah,
26:07
held it back for sure. Yeah, No, I mean I pick
26:11
up on that point of being a fighter as well. And I've noticed this
26:17
with myself and with others that I've spoken to. That because partially because of
26:23
the amount of surgeries that you do have with Herschbrungs, because it's not for
26:27
anybody who's I'm sure it's not just one and done. You do have quite
26:33
a few surgeries. I mean I'm in double figures now, so I have
26:38
quite a few. And there are many people who've had a lot more than
26:41
me, and they are a lot younger than me. But you do build
26:45
this resiliency and sort of have a a very high pain threshold. I mean,
26:56
it takes an awful lot for anything to it really caused me any pain.
27:00
But I attribute that to my Hushbrungs. Is that similar to you,
27:04
Louisa? Sorry? I think in terms of a high pain threshold. I'm
27:14
I don't know anything different, so I couldn't necessarily say yes or no.
27:23
But I know from a mentality perspective, I definitely when I do need to
27:29
call on that, I need to be mentally strong, I kind of do
27:34
remember that from birth, I've gone, I've gone through these surgeries, I've
27:40
gone, I've thought hirshbruns. You know, it's I don't want to say
27:47
invincible, but it does keep me going, you know. So I think
27:51
for me it's more a mental standpoint rather than a physical standpoint. But that's
27:56
only because I don't know any anything different. Yeah, So, yeah,
28:03
that's that's interesting because there will be because hirschbrngs is from birth, isn't it,
28:08
So it will be Anybody with hirshprungs won't know any different. They won't.
28:15
You know, I don't know a life without hirshprungs, and I don't
28:19
know anybody else who who has hirshbrongs who does know a life about hirschbrunks.
28:25
I mean I was diagnosed three weeks after birth something like that. Most are
28:30
diagnosed within a few hours of birth or a few days after. When when
28:37
were you diagnosed? So I was. I mean, this is probably a
28:44
question for my dad. Yeah, I was thinking that one. Yeah,
28:48
So the reason was two days. So Loison was born on a Monday,
28:59
by Wednesday evening, so she was born run Stone on a Monday. By
29:03
Wednesday evening we were in in Cardiff and one o'clock Thursday morning, so two
29:14
and a half days we were told shot hirshburns. So it wasn't an immediate
29:18
diagnosis, it was it was, you know, within the sort of standard
29:25
couple of days that people would normally say, yeah, you know, if
29:30
you've got hirshbrons, a couple of days you exhibit the sort of possibly distended
29:37
tammy or whatever and and then they start to give your tests. So yeah,
29:41
that's that's Louisa's time for him. Yeah. Yeah, it sounds like
29:45
a fairly not the hirshbrongs is normal, but a fairly normal way of being
29:52
diagnosed with hirshbruns. That is usually usually within the first few days to a
29:57
week. They you tend to be people tend to spot the signs and then
30:03
you diagnosed fairly shortly after that. But I wanted to move on to sort
30:11
of now and what you're doing now and how hirsh Bruns has potentially helped you
30:22
in your studies or whether it has helped you at all. Yeah. Absolutely
30:29
so. I'm currently on a gap year from Cardiff Metropolitan University, but I
30:36
am studying sport Conditioning Rehabilitation massage, which is a fancy name for sports therapy,
30:45
and I do really enjoy the course. It's wonderful and I think I'm
30:55
not one hundred percent you were on my own goal at the moment. But
31:00
since a young age, I've said I want to go into Hirshbuns in some
31:04
way or another. At one point I wanted to be a Hirshbung's researcher.
31:10
Another point I said I wanted to be a pediatrician specializing in Hushbruns, and
31:18
whilst that hasn't quite materialized yet, I think I'm at a point that I
31:25
definitely want to go into Hirshbung's research, and that may not be in a
31:33
lab. It might be looking to work with children, adults, Hushbungs patients
31:42
who have some sort of colostomy aster me and helping them through the rehabilitation process
31:52
of that. That's something that I do feel quite strongly about that I didn't
31:57
have as far as I'm aware, and so as I said earlier in dance,
32:04
my stomach muscles were awful. And so just kind of working with the
32:10
Hirschbuns community, whether it be on a professional level or in like a voluntary
32:19
sense on the site type thing, but just to help in any way I
32:27
can and use the skills and knowledge I'm learning in university to kind of give
32:34
back to the community, because I think in this day and age with social
32:43
media, we can reach out to each other and realize we're not on our
32:46
own, you know, and that there is stuff that can be done that
32:55
isn't necessarily surgical. And I'm not such us in that you don't need to
33:01
have surgery, but as well as but as well as the surgery, you
33:08
know, there's pain management, there's aftercare, there's things that we can do
33:16
to kind of what's the word like, to really help hirshbungs, patience,
33:28
survivors, warriors, whatever you want to say to just I feel better is
33:37
an understatement, but you know, to deal with the hirshbrons because it's not
33:46
as you said, it's not a one surgery and you're done. For a
33:52
lot of people, there is complications. Surgery have to surge, you have
33:58
to surgery. You're not really getting anywhere, and so I think it has
34:04
influenced how coming back to your question, sorry, I think it has influenced
34:09
what I wanted to do, because, as I said, as much as
34:15
I love sports therapy, it's not working with the population that I do want
34:22
to work with, which is the Hirshman's community. It's interesting. I mean
34:28
I touched on the point you said earlier about stomach muscles, and that was
34:34
something you taught me when we first had our conversation. That makes total sense
34:39
now, but I never understood it as a child or a young adult that
34:46
yeah, of course my stomach muscles would be rubbish because I haven't gotten it
34:54
or I have very few, so I get I never I never really understood
35:00
that, and that was Yeah. It's again, this may have clicked with
35:07
everybody else much sooner than me, and it might just be me being very
35:09
thick, but yeah, it just didn't click with me until you said it.
35:15
And it's it reminds me of something I did in the summer. I
35:21
ran a race in London or was it someone a few months ago and one
35:27
of my friends commented on my running style and said that I lean over too
35:30
much because I haven't got any stomach muscles to hold me up. But it's
35:37
things like that that, you know, because people don't know that you have
35:42
the condition because you don't you know, it's not visible. People can't necessarily
35:50
see that. It's not necessarily your faults or or it's possibly a bit trickier
35:58
than others to you know, for example, hold planks or to be able
36:04
to lift things or whatever it might be, just because the stomach muscles aren't
36:07
there. But yes, no, no, thank you very much because you
36:10
taught me that, so yeah, so thank you, but yes, you're
36:15
right with And that kind of neatly ties us on to the next thing when
36:21
you when you were talking about helping and community and trying to have a community
36:30
out there, because I think, as you've sort of touched on, we
36:35
didn't know anybody else growing up who had this condition. Certainly I nobody had
36:44
necessarily heard of it. And if we can have and I know there are
36:47
communities out there who who do bits and pieces for Hirschbrungs, and they do
36:55
phenomenal jobs, whether it be on Facebook or whether it be charities. They
37:01
do some phenomenal work, but to have more awareness out there I think is
37:07
really important. And I'd sort of come back to your point Andrew, about
37:15
when Louise is diagnosed with Hirschbrung's disease, how how much support and not necessarily
37:23
from sort of the hospital, but sort of things you could search or research
37:30
or anything like that was there around Hirshbruns. So I think we've got to
37:37
consider tiny things. I guess I'm not necessarily say Google was very much and
37:47
very much maturely adoption stage. You know, I work in technology and have
37:52
done for all my work in life, so I guess I was an incredibly
37:57
really adopter. So you know, the Internet was something that it was an
38:05
early research tool that there wasn't a lot out there in those days about hirsch
38:09
burns. You know, this is almost well it was pre Wikipedia, for
38:14
example, and you know Wikipedia is the font of all knowledge, right except
38:19
where it isn't. So what we had was all the hospital could supply us.
38:29
Here's one or two these things called what do they call them websites?
38:36
Yeah, because this was twenty twenty two years ago, and the aftercare and
38:43
the support that we had, you know, yeah, we had we had
38:45
great medical staff who answer all the questions we had for them. We had
38:51
a stomachcare nurse that came came to our home every a couple of weeks to
38:54
make sure we had a the right type of supplies because as the Wisa was
38:58
growing, you know, her her cost bag for changing size and get the
39:04
underworld and stuff. As she got older and we'd had we we'd have the
39:09
care from the medical staff at the hospitals. But aside from that, there
39:16
were there was pretty much nothing. And that's not that's not to say that
39:21
the medical staff and the people did support weren't good enough. They were absolutely
39:24
the best that they could be. And but I guess it's the sign of
39:31
the times that in those days there wasn't any to get them tears that perhaps
39:42
helped us. Where now we have the Internet. And I think even though
39:52
science, as we said quite early on this season, talked science has moved
39:58
on, but the support the TVs that I think are out there possibly haven't
40:05
kept up with that. You know, things like Louisa was mentioning about her
40:08
stomach muscles. Where where does it say that, you know, if if
40:14
you're a child is diagnosed one of the things you might encourage them to do
40:19
gymnastics, for example, to get the stomach muscles in other things that we
40:30
have done to help hard we known of them. That's that's an interesting point
40:36
that you make that actually going and doing sports or activities that would strengthen stomach
40:46
muscles is probably is something that is really really important because I think almost the
40:57
certainly when I when I was growing up, it was almost the advice was
41:00
the opposite that actually, you know, avoid doing too much with your stomach
41:06
muscles because they're a bit weaker, and et cetera, et cetera. But
41:09
actually I think going the other way around, so long as you're sensible with
41:13
it. And again this isn't a podcast for medical advice, not just make
41:17
that clear. I am not a doctor in any way, shape or form.
41:22
But actually doing yeah, gymnastics, doing We're not saying, you know,
41:30
go crazy, but doing things that would help strengthen stomach muscles are really
41:39
really important, as they are for everybody, but especially with somebody who has
41:44
those stomach muscles lacking. Did you did you find that, say, did
41:50
you find that your stomach muscles improved when you did gymnastics? But that would
41:54
be probably the arsw would just be a straight yes, I imagine. I
42:02
I don't know. I did do gymnastics for a few years, and I
42:09
don't think it was really my thing, but kind of comparing it to dance,
42:16
where again, especially ballet, where stomach muscles are needed continuously to maintain
42:25
that posture. Evidently not from when I started over to you know, mid
42:36
teens, when I said, this isn't really for me anymore, And that
42:40
wasn't because of my lack of stomach muscles, it was they just never seemed
42:47
to change. And again it's maybe I didn't have it hadn't clicked that most
42:55
of my stomach is scar tissue, so I can't just pull my belly in
43:02
and suck my stomach in like everybody all the other girls around me were,
43:08
you know, it's it's not quite the same. And so even just educating
43:15
ourselves and parents' families people going through this, that the right type of exercises
43:25
and it doesn't need to be planning because it doesn't need to be sit ups
43:31
and all those horrible co exercises. It doesn't need to be that at all.
43:37
But just kind of it from a personal standpoint, it was a light
43:45
bulb moment, and it sounds like I've passed on that like bulb to you
43:53
that, Yeah, you know, our stomachs aren't like everyone else's, and
44:06
quite a lot of us have had fairly large portions of, if not all,
44:12
of our interestin is removed. And so even there, our stomach muscles
44:19
aren't necessarily going to sit correctly, so and they need to adapt to that
44:29
as well. But yeah, I think taking it beyond that in terms of
44:35
after care and support, a lot of the support that we had back then
44:40
was was purely medical, whereas you know, we didn't have I want to
44:50
use the term counseling, but that that maybe isn't right. You know,
44:53
we didn't have the support that says, well, okay, now you have
44:57
a childhood, this is what it is, this is what to do,
45:00
this is how you can help your child in my best you can. It
45:06
was very much about let's sort of deploying. Yeah, yeah, very much,
45:13
the sort of practical, the the things you can see as opposed to
45:20
And I think you make a really really interesting point, and I think that's
45:23
something again I'm going back, you know, twenty thirty years ago, something
45:30
that wasn't wasn't talked about was mental health at all, and something that's a
45:35
lot more prevalent now and something that I think is really really important when it
45:40
does come to Hirshprungs. Especially again in doing the research for this, there
45:47
are a lot of conditions linked to Hirshprungs. So people have Hirshprungs and another
45:52
condition, but none of that's talked about. It was just you have Hirshprungs
45:58
and that the world was as we said, the world was a completely different
46:01
place. I think, yeah, as you said that, people just look
46:07
at the internal stuff the right, this goes here, and this isn't working,
46:14
and this is missing, and YadA, YadA, YadA, and I
46:19
think talking about everything, well, everything else that's kind of goes along with
46:24
having Hirschbrungs or another long term health condition. Has said it has very much
46:30
been linked to crones and for obvious reasons, and very much linked to autism
46:37
in the research that I've done, and not a lot is made of that.
46:45
They've been several people who've contacted me who said, I, you know,
46:47
my son daughter whoever has herst Bruns and they have this other condition as
46:54
well, and we didn't know at the time. So yes, I think
46:59
that's incredibly Yeah. I think for me, as I kind of said earlier,
47:08
it's well, you know, it's not just the medical side. It's
47:14
where as a person, even at that young age, ourselves the person with
47:21
hush runs, but and the families and caregivers, you know, we are
47:28
all around these people. It's not just a two D. It's not the
47:32
hush runs and you're good for life, you know, it's as you say,
47:37
the the long term and short term medical conditions that go with it.
47:43
It's the mental health, it's the practical health, it's the peer support that's
47:49
needed. It's the how do I tell someone my child or I have hushbruns?
47:55
I think, I mean, even like how do you tell a partner
48:00
you've got after that's you know, that's something that that's not ever an easy
48:07
conversation. But yeah, it's almost making it an encompassed not just two deep
48:16
Hushbrun's label. Job done. It's there's so much more to it than that.
48:22
Yeah, absolutely, and so touching on my final point. Really,
48:29
I come to you, Andrew with I've had plenty of conversations with people and
48:35
messages from people have said, my son and my daughter has just been diagnosed
48:39
with Hirshbrung's disease. It was diagnosed a few months ago. What would you
48:45
say to somebody who was concerned or worried that their child's just been diagnosed with
48:52
hirshprungs. As a parent of a child with hirshbruns, I think my my
49:00
first message would be, don't be scared. It is a serious condition.
49:07
There's no getting away from that. It is long term, it is,
49:14
but please, please, please don't be scared because there are always through this
49:20
and you will end up with son or daughter you've always dreamed of. That
49:30
would be my first message. Yeah, for sure, for sure we have
49:36
yeah, and if we can do it, anyone can do it. And
49:39
touching on that point because obviously this podcast is about inspirational people and people really
49:47
want to get to interview. How I'm sorry about this, Divisa, How
49:52
proud of you are of Louisa? And how fast is calm from her hirshbumps
49:58
condition? At this point where words would fail me. She she's had she's
50:07
had a tough life from almost from day one, and she she continues to
50:15
fly daily with what she does. And I think especially the passion of which
50:22
she takes things on. You know, she she will take cause and she
50:29
will fight tough and nail for her and I were you know, it's the
50:36
old cliche. Would I change her? Absolutely not? Would I would?
50:40
I want Louisa not to have hersh brands in a in a crazy, odd,
50:47
fatty sort of way. No, because I think it's made of what
50:52
she is. M hm. Yeah, I'm incredibly proud of her every day.
51:00
Sure. And lastly, Louisa, I always sort of said a little
51:05
bit about support your sports therapy and and all the great stuff you're doing on
51:12
your your gap year and what you want to achieve with that. But what
51:16
would ideally the future hold for you personally? For me personally, I think,
51:27
oh that's a really good question. Sorry, I left it till last.
51:32
On a personal level, I want what everyone wants, I guess,
51:38
or most people want. I want to travel, see the world, a
51:45
good job that I enjoy, has family. Yeah, I just want to
51:52
normal life, I guess. If that's a sense of answer, yeah,
52:01
well as normal as we can get. With Hirshbrugs as normal. Yeah,
52:07
as normal as we can get. Fantastic. Well on on behalf of me
52:12
and the podcast I'd like to say thank you very much both of you for
52:16
joining me for episode four of Tom's Hirshprong's podcast. We will be back with
52:23
another episode next week. Thank you very much for we be back with episode
52:28
five. Thank you, Thank you, Tom. Thank you for listening to
52:36
the podcast. Find us on Instagram and Tom's Underscore Hirshprong's Underscore podcast. Listen
52:42
to previous episodes on Spotify by searching Tom's Hirshbrung's Podcast