Latest / Tom's Hirschsprung's Podcast / Episode 26 - With Loren Harris

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Episode 26 - With Loren Harris · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirschbrum's Podcast, where our provide a look into the
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remarkable experiences of the most inspiring people around Hirshbrung's, Disease and Sports. Hello
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and welcome to episode twenty six, Tom's Hirshbrum's Podcast and very special guest with
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me today another Hirshbrun's Hirshbrong's guest. I have Lauren Harris with me today and
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we're going to talk about your journey through hirsch Brons and everything you've become placed
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to your operations as well, and we're going to talk about all positive things
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with that. So welcome Lauren, Welcome to the podcast. Hi, So
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you're joining us all the way from Germany. I understand, yes, yes,
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my mother's American, my father's British, but I was born in Germany
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and raised in Germany. So yeah, so many but multi lingual, yes,
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fantastic. Well, thank you so much for joining me. And I
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know I've been talking offline. I put a post out in the English Facebook
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group asking for asking for people to come and share those stories. So I'm
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trying to get as many as many guests with Hirschbrungs as I possibly can,
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and you were very gracious in responding and said, I'd love to share my
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story twenty years old. I'd love to love to talk about my experience with
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hirshbrus. And again, as we've been talking offline, just a little bit
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about your your experience. You've got quite quite the story to tell, and
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I'll I'll let you. I'll let you you tell it. I won't spoil
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the surprise for everybody, But if we start with I guess when you would
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diagnose with hirshbrungs. I from from what you told me, it was fairly
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sort of standard, within the first few days and weeks. Is that correct?
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The day I was born, it was, yeah, I was born,
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and then I was always just throwing up and I wouldn't take the milk
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that my mother was trying to give me. So the doctors just said,
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okay, we'll take over to the hospital next door, which is UH which
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is the university hospital, where they can do more more tests to see what's
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going on. And then they quickly realized that it was hirshbones. But at
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the same time they said, we can't do anything here. The surgeon who
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would do these kind of operations, he is in the hospital. He's on
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vacation because I was born in the summer holidays is so they had to send
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me off to Hanover, which is kind of like three hours two hours away.
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So I was flown to Hanover by a helicopter, and the first day
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I was the first day I lived, on the ninth of August. They
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operated on me and gave me my first soma M and then after that I
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had another operations and the fourth one was then the final one where they took
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the larger testament. So again sort of I could relate to. It's a
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little bit very similar to my story where you kind of sort of not diagnosed
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one hospital and then have to go to sort of bigger, larger hospital to
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be properly. I guess in university commas diagnosed, so diagnosed with first bronx
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sort of they're very very early on, and those first or operations I know
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you said to me had fourteen in total, and had the first four I
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remember, ob see, very early on. With the next ten, I
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guess sort of fairly spread out or were they in sort of blumps and clusters,
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So I think it's actually five operations. I get CONDUCD with then it's
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it's five operations when I was a little baby, because they I guess it's
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also because they were it was all still new. It was two thousand and
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three. The medicine wasn't as experienced as it is right now, and they
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just kind of did the first biopsy but didn't. What they do now is
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go through your whole larger testine and see until where you can spot the ganglion
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cells again, and they didn't do that with me. They just started at
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the bottom, saw that there weren't any ganglion cells and then said, oh
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wow, because host ononse is any very rare, it can't be the whole
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larger test can't be the whole large intestine that it's infected. So they kind
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of just said, okay, then it would only be a small one.
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And then like when I was a probably six seven months, I don't know
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how old I was, they did the second operation to with the goal of
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taking the part of my large intestine that is affected out. But then it
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turned out when they opened me up, they saw, oh wait, no,
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it isn't just a small part, it is the whole large intestine.
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I'm part of the small intestine. So then they had to sew me back
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up and make a new plan how they're going to deal with this during the
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But during that operation, apparently they didn't do a great job but sewing me
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back up because I kept getting sick. I kept yeah, I was just
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not doing well. There was one point where my mom noticed I wasn't doing
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well. I was sick. I was in the hospital at the highest hospital
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mainly week anyways, but she again noticed I'm not doing well. She said
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I was sick. So she went to the doctors to the hospital, but
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they said, oh no, she's fine, she just has a code or
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something. So they sent them back home. And then I don't remember this,
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of course, but my mum told me this the next morning. She
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woke up and I wasn't My skin was blue and black. I was.
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She always says, I look like an old grandpa kind of. I was.
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I know, really really, I was nearly dying. So she went
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back into the hospital and they apologized. They said we should not have let
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you go. And then they noticed, okay, they left. They didn't
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do the operation well, so they had to reopen me like twice again and
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just pix all the issues they've done the first time. When they thought it
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was only a little bit of pick wow one, so that that's incredible.
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So effectively was it the same so the same operation wise, they just sort
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of didn't do it quite right the first time. Is that right? I
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think so? Yes? From what I understood, my parents don't remember I
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went through the old doctor files, because they kept all the files. I
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went through those. From what I understood, it kind of was that it
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was just cleaning up everything and making sure because they kind of rushed it because
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they were so surprised that my large intestine was fully affected. They weren't prepared
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for that. No, so I imagine, I again I don't know this.
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I'm not medical expert, but I imagine maybe long segment potentially could have
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been fairly new or not not seen as much. Again, I don't know
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the statistics, the odds, the percentage of having Longhurst brums to having short
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the short segment. Again, as we were talking up there, I'm sure
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maybe you're a long segment so and I've met people who have both. So
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I don't know. I don't know whether it could have been a case of
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not seeing it a great deal of If HEIRSHPRNGS is obviously rare, and long
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segment is even well more even more were yeah, yeah, yeah, yeah,
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So yeah, it was just they kind of just they didn't do their
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tests way very well. They kind of just said, oh, it won't
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be long. Second, because first of all, I don't know if you
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know this, but HIRSHB is most common on the boys, so it's most
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diagnosed. Boys have it. Girls don't usually have it. They do,
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but it's not as often. So that was one thing. And then they
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think, I get thought, I guess that, Okay, then it must
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be shots like, but they can't be the whole in testing. They just
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didn't think it through and didn't make the test that they had to to make
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sure. Yeah, no, I do, Yes, I am, yeah,
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definitely aware that that it is more common in boys. It's obviously a
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chromosome. I go into the whys and the wayforce of how and why and
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whatever, but it is definitely more common in boys. But in saying that,
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and just in sort of podcast terms, most of the people I've interviewed
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with hirshprungs have been female. So yeah, and so even though yes,
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it is it is more more common in boys. If you do if you
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are listening and you do have a baby girl with with hirsprungs, or if
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you are a woman with hirshbrungs yourself, don't think you're alone in this because
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there are there are obviously having Lauren Sidney here with me as well, there
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are multiple stories of people with hirsprungs, and in fact, next week I've
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got one into being somebody with hirshprung's who's female as well. So there are
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plenty of people out there and plenty of people willing to share their stories.
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So please, please, if you do, if you are female and have
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hirsh bruns, where you have a daughter who has first bruns, please don't
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feel like you're alone because I again speaking to my parents on this, I
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know that they can feel quite isolated at times. Be continue is a rare
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condition and you don't if you don't see it every day, certainly don't meet
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a lot of people with it. So so yes, please please don't don't
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feel your your alone in this situation. So we bring it bring it back
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to your story. Sorry, I was rambling a little bit that Tom bring
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it back back to you. So how old were you roughly when when this
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is all happening. This was all kind of into from day one. But
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like I said, the first day was my first one, and I think
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when I was like one and a half, I had my last operation and
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that was the final one where they took the whole urgent tester and the small
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part of the small and testing out, and that was my fifth operation,
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not my last, but for that time, per be at my last because
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then wait, I just want to say one thing which I always think is
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really important, especially for parents out there who have kids with hirsh buns or
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you just have a kid with a disability. Try to trust your god instinct.
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Try to trust what your God is telling you. Because my parents had
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like that story I just told, and another one where we I kept playing
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issues with my stoma with my Tommy and then suddenly, yeah, I was
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in hospital and I kept having these issues. And then the doctor went to
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my parents and they told them, we don't think Lone has hush bunks because
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if Loan would have hirshbunk was just too rare. So we don't think Loane
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has hirshponse. We think the issue is that she has the stoma, and
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the stoma is creating all these she's full. So they were actually trying to
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convince my mother and my father to take out the storma which at the end,
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if they would have said yes to that, I would have I doubt
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I would still be alive. But they trusted their God and they trusted their
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instincts and went for it and said, Noah's sticking with the soma. We
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do think it's Turchmans because the tests said it Surchman. They did tests and
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they said it spun hm hmm. So just try to trust that you're doing
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a good job and try to trust you got instinct. If you got this
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telling you that your kid is sick and she needs to go to the hospital
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or he, then do it. Mm hyeah. Yeah, that's all.
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It is important more. And this is no way hate to doctors. I've
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had awesome doctors and they helped us a lot, of course, but they're
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also only human, and it is a thing that disease that is not really
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well known. They usually when you say I Hirst one day said, oh
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I heard from it at some point doing my studies, but that's it.
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They never actually saw a person who has hirshbuons Mmm. Yeah, yeah,
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definitely. There are very sew. I've spoken to quite a few doctors who
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specialized in hirshbrunk, but in terms across the world that there really isn't that
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many. There's not many that that really it's like you said that they heard
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of it and they know yeah, bits and pieces, but might not necessarily
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know the ins and the out. So yeah, definitely, and again sort
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of just sort of on a personal level for me as well, that that
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that kind of gut instinct was very much the same with my mum. She
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she had a gut instinct that the doctor was saying. You know, she's
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told me this story quite a few times, but it was it was a
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bank holiday. The doctor was sort of less than keen in coming out and
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visiting because it was a bank holiday, and and she she had a gut
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instinct since she said, my child isn't well and I know is not well.
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And in the end the doctor did did end up apologizing to my will
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and said, actually you were right, you know, And yeah, so
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I get that gusting sticks. Definitely, definitely. So it sort of a
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year and a half end of eighteen months, it will take five operations now
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only the nine to go. So so living with Hirshprung's again kind of talk
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about that a lot were you obviously had had the stonema, but able to
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live sort of very normal, very happy, happy life, just sort of
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slightly aware that he had a stonema or count a tackco Okay, know,
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with the fifth operation, I got my stomach taken out, so I didn't
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have a storm, Marty, Right, Yes I have a stoma now,
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but that's later in time. And yeah, at the time, I didn't
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have a storm anymore. And I started, I started getting better and better,
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and I was It went from going every week to the hospital to going
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maybe twice a month and then once a month, and it got less and
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less over time, over years, got less and less. It's true I
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remember him when because for me, going to hospital was normal. It wasn't
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about horrible thing. The nurses were awesome and they would play with me and
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we would play cards, and I would get lots of attention from my parents,
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and so I don't remember being in a hospital or as a bad time,
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but just because the nurses made sure I didn't, because they made sure
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that I also had nice times there. So I remember when I went less
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and less to the hospital. I turned to my father and kind of told
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him why aren't we Why aren't I going to the hospital anymore? I wasn't
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there for ages? Can I go? I want to see the people there,
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And then that the father started laughing. Quitas was like for me,
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it was of the Norway experience going to the hospital and seeing people in here.
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It wasn't anything abnormal, and I remember missing it. I don't know
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why but I did, but yeah, I got used to it. And
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then it really went to a time when I was like six seven. I
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was fine. I maybe was in hospital twice a year, and that usually
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was because I didn't have enough flut. My stomach couldn't taken enough fluid,
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so it would have to have an ib for like three four days, and
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then I would be fine and at a hospital again, and I'm back in
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school and that was a really nice time. It was Hirshman's was something I
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had, but it didn't check me that much. The only the first memory
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memory I actually have a bit affecting me where I noticed, oh wait,
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I have I am different and other people is because with hirshbunks, especially when
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you're young, you have a really really big tommy and it kind of looks
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like a bit at the extended tommy, it looks like you're pregnant, kind
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of sure, and that that went away with it for me, that as
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I grew that Tommy got smaller and now it's just normal. But yeah,
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I was playing with a friend on a trampourine and I was jumping up and
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down and I was trying to get a ball from the ground and I couldn't
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because my Tommy was that big, because it was in a way. And
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I think that's really the only memory and the first memory of me really recognizing
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that I'm deferent and not right and really noticing my hirshbunx and the rest of
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it was just normal. It didn't really and that's also to do with my
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parents. They treated us as being normal. They didn't make a big thing
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out of it. They still made sure that I know that I have those
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brongs, but they also made sure that I'm not shy of having those ones.
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I don't want to hide it or anything. It was just the fact
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that I have and it's fine. Yeah, no, that that that sounds
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great, and I think that being aware of it is important, but it
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doesn't define it if it's not you know, you're not Lauren with Hirschbruns,
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You're lot. You know, it's and I think that that's really important to
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to sort of, you know, have that as normal. You know,
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obviously you still have the hospital and the check ups and why not, but
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and still have a rare condition. But to be as normal as possible.
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That that that sounds fantastic. I'll pick up a couple of points that you
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said that one about the doctors and the nurses just being so so good,
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and I'll point out in this country as well that the doctors and nurses looked
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after me and the several people of dubtor to just been fantastic. And I
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think when you said about they would play games with you, that play cards,
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etc. I think that's a really really important point that And again going
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back to sort of being normal and yes you're in yes you're in the hospital,
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and you know why you're there type thing, but it kind of takes
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your mind off it and you go, you just go and do normal things.
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And I think that's that's fantastic. Yeah, my mother told me about
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one situation with I understand what the doctor means and in some case it makes
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sense, but my mom will and I think it was after my it was
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right after my operations something like that, and all of this was going on,
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and I was still kept getting sick. It was getting better, but
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still it was a lot for my parents to handle. And she was at
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my normal doctor here in the village talking to him, and she was crying
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and saying, it's just so difficult. And the doctor said, you need
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to listen up this condition that your daughter has. She will conceive it the
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way you can sive it. If you see it as a negative thing and
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always complain about it, she will start to see it as a negative thing
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and always be unhappy about it. But if you tweeted us being normal and
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if you try to act normal about it, and she will see it as
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normal. And she and mom kind of said that was the moment she stopped
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complaining about it in front of me, about my disease, because what he
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was saying was right, and it is how you perceive your perceived the disease.
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The parents perceive the disease, the kids will perceive the disease. They
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will look at how other people see it and then yeah, that's how they
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learn. That's so true. Yeah, No, I see that other people
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ends up being I can end up being a self fulfilling prophecy a little bit.
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If you if you constantly think, oh, this is going to happen,
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and that's going to happen, and I'm going to be really ill,
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and then you know, then it's sort of spirals and whatnot. So yeah,
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being being yeah, I mean not to get away, you know,
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some some part of it of Hirschbrung's sucks so that it's not great, but
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it's trying to be positive about it and go, Okay, what can I
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do rather than what can't I do? I've always been in this podcast is
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about always been a huge advocate, whether it's in the podcast or whether in
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my teaching career that I had and things like that. It was all about
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okay, what can we do? What can what can you do? Rather
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than I can't do this and I can't do that, et cetera, et
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cetera. So now that's that's a really important point. So thank you very
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much for sharing that. So if we if we move on as well to
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or something that you mentioned to me, or poly neurope, which I did,
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I did. I did a little bit of research in and I sort
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of got a little bit from the word polly obviously meaning you know a lot
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and neuron being being brain lead and it sort of damaged nerves, damaged peripheral
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nerves. So was that something that was associated with the hirshprongs or was that
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just bad luck? That's the thing is that's interesting. It has nothing to
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do with hershbrongs. And but it's my I oh, I think do you
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know Gilliam Bastard him, I've heard of it. Could you give us a
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little big exploration on it? I can thrush them and Gillian BASSDM is where
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your nerves? I think they start getting damage or they stopped to work.
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I don't know the scientific no, hah. It's when your body starts attacking
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your nerves. They thinn't like when you have an infection. Your body goes
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to taxed the infection, so it goes away. So and the body suddenly
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missing terms your certain part of your nerves as being an affection and they start
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attacking it and then they get damaged. And I think when I was around
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fourteen thirteen fourteen, I started not being able to pick my feet up like
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this. Oh, I can't it's a podcast. I don't know how to
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know if we can explain it. Yes, so not not not able to
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flex your toes towards your leg that kind of yeah, exactly, Yeah,
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I couldn't. I could walk, but I would kind of just grow on
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the ground pretty much. So I wouldn't pick really my feet up because you
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have to move your ankle and I couldn't do that movement and your ankle to
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go up. And maybe that's the best whenace. We haven't air video yet,
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it'll come so and I remember because I didn't notice it, because if
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that's something that gradually happened, but I remember mom noticing it, and she
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told me no, and stop being lazy, pick your feet up because she
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thought I was being lazy and didn't want to pick my feet up, which
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is I think the now will react. We would have ridic as that and
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I didn't get what she meant, and I was like, what do you
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mean? And then I started walking weirdly. I don't know, but the
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point where they noticed something was weird is when I would also do that in
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soccer, because my soccer coach started telling my parents, she's not picking her
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feet up, she's running weirdly. And then they went to the hospital and
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they found out it was getting embassador them, which I am lucky about finding
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out, because Gidi ambassam and the syndrome is something that can get worse and
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worse, and at the end you may end up in a wheelchair and you
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can't move your legs at all anymore. If you don't they catch it right
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away. And luckily they caught it and they were able to they were able
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to fix it, I guess, and I was fine again. But like
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two years after that, I started my feet started deforming, which meant that
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my muscles started getting weak in certain parts of my feet and my yeah,
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and my feet then started going in it into this deformation because of the weakness
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of my muscle. Because if you don't help, if your muscles are used
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the same everywhere, it did, everything shortens and then yeah, and that
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would that then slowly created pain and we went to hospitals. They couldn't figure
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out when I think why it was, why my WHI I was having this
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much pain. One doctor kept putting me in there are these shoes. If
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your toe is operated on, you can wear these shoes where you don't put
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any weight on your toe. Because I had the issues of my toes.
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My toes were hurt really month, and I would walk around and that for
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like a month, but then I was of it. That was the third
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doctored scene, and he every week we went there and he just said.
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I would say the pain is a better, I still can't really well,
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and then he would say, okay, just where this he oh, it's
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probably I don't know. I think he was just thinking I was making it
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up, and he thought okay. But I got sick of it, and
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then I started saying to my parents that's fine, the pain is gone,
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which was not the right way to go because I then coped another year with
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this pain in my feet. Then it was getting worse and worse, and
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then we went to more doctors, and I think after the eighth doctor he
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finally told us, oh, it's polyno apathy and and pollino apathy, like
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you said, is a disease where your nerves nerves get more and more damage,
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so you have more less and less feelings in your nerves. They're in
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your feet and things like that, because the signals will go will go from
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your what's the German word for your brain, from your waying to your feet.
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You gay your sending signals to move, and these signals go down slower
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because of my nose that damage. Mmm. And that's kind of what happens,
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which is also why I got this deformation, because my nerves were just
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not sending the signals to my muscles and the muscles started getting weaker, and
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that's why all this happened. And I still straight away I started with physical
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therapy and everything. Mm hmm. But yeah, and now yeah, and
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that's how they kind of figured out what it was. So so is there
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anything that you do specifically? So I don't know, you said physical therapy,
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but is there not saying that there's a cure or whatever, but is
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there is there anything that you can do to help it or prevent or prevent
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the symptoms or the thing is putty. That's why I was saying talking about
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Giliam Bason. We don't know where my polyno party came from. It could
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be that it comes from when I had Gidi embassing room that that's just an
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after but pullin a apathy has many There are many different forms of pullino apathy
28:06
that you can have, and some you can cure by it. Some it's
28:11
just if you don't have enough vitamin B twelve in uses vitamin B and your
28:15
system, so you get more vitamin B and then you're fine. But with
28:19
my form, they don't know which form I had have the one the forms
28:23
that they know, they can say I don't have those, And with that
28:29
comes a lot of uncertainty that I kind of just have to accept. And
28:33
the things that I can do is still go to physic good therapy and do
28:38
these exercises, muscle exercises so my muscles don't get too weak, and at
28:42
some point they will stiffen. But at the end it's just it's just slowing
28:51
the process down because you're pulling a upathy. And again this depends on what
28:56
kind you have. Some pulling oopathies just at some point there will start and
29:00
you will be like that for the rest of your life, for how you
29:03
are like that. So it could be with my deformation my feet, that
29:07
will be it. And then I'm fine. I can't do lots, I
29:11
can't walk my use, but that's fine. I can still do everything that
29:15
I want to or sometimes i'd fall down. Sometimes you could do because of
29:18
my mother, I jing this is I always have to like I'm not to
29:22
runt. That's just mysy. But it could also be that my pullin overpathy
29:30
gets worse and worse. But at some point I will run in a wheelchair
29:33
because I can't move my legs anymore. So it's a disease that you that
29:37
I and the medicine at the stage the medicine is right now that we can't
29:42
figure out how it will end, what kind of whole thing it comes for
29:48
michaelam bassing them because that would mean that it would just stay like this MM,
29:53
but we don't know, okay, so so you will. You also
29:56
mention played football football, we'll talk up as well. Did did that sort
30:03
of have an effect on you playing football? Do you still play now or
30:08
did you stop? Or how did that go? Yeah, it was difficult,
30:14
because yes, it did have an effect on we played. I used
30:17
to play football twice three times a week when I was a kid, and
30:21
I loved it, but with the Gilliam Barson, and for one I had
30:22
to stop because the Gillian Barson gets worse before it gets better, and so
30:29
then I had to stop. And then after a year I think I could
30:32
start again, and I tried, but I just didn't enjoy it as much
30:36
anymore. And I don't know if it was because of my muscle weaknesses.
30:37
I don't know. So then I stopped again and I had like phases that
30:45
even now right now I'm doing stuck again. But the thing that I find
30:48
difficult about playing soccer is when I do these kind of things, I know
30:55
just my muscle weakness is way more because I of course twit more for more.
31:00
So it's always a confrontation with my disability of confrontation with Okay, maybe
31:06
this will be the rest of my life. Maybe I will ran in a
31:08
wheelchair, which I am still at the process of accepting and glading there.
31:15
It's not fully there yet. With first ones, I fully accepted it and
31:18
I just bloom out of it, and I don't mind it. Pulling a
31:22
little party is just something that I'm still working on accepting, and I think
31:26
it will be a white one to fully I'm able to accept it just because
31:30
I did not know where it will end. I did not know how much
31:33
it will effect my body at the end my future. But it's just something
31:41
that I deal with and it depends on how I'm doing. If I'm doing
31:45
great, I will start sucker again in a team where it just they don't
31:48
play any big matches. It's just for fun and I just tried to enjoy
31:52
myself. But sometimes it just I just don't want to be dealing with the
31:57
fact that I've pulling over, but fully know Pat and then I will stop
32:01
for a few months, which is fine too. That's how I'm dealing with
32:06
it right now. Yeah, makes sense, definitely. Yeah. And if
32:09
we circle back to Hirshbruns as well, because I mentioned something at the Star
32:15
that you mentioned to me when we were talking of line that you've had something
32:21
I haven't heard about at all. And if any of the interviews and done
32:24
and in any to any of the people I've spoken to it, I'll be
32:29
really interested if anybody listening to this has heard of this before. And if
32:34
you do, let me know that you had Hirshbruns wwice. Do you want
32:38
to explain? Do you do you want to explain what you mean by that?
32:45
Well, what I mean by that is that when they take out your
32:49
Ladge and Peston people have responsibill know this, They always leave a bit down
32:55
on the anus because they can see the small and testing white onto the ainus
33:00
muscle. They can't do that, so they need the small bit of the
33:04
larger testing on the anus, so they can just sue it on that bit.
33:07
Yeah, see that bit together. And when I was going up,
33:13
and I think I was around sixteen, I really was growing. What we
33:17
didn't, I started having issues again. I started having tommy paines. I
33:22
was feeling like I was going to throw up. Yeah, so we were,
33:28
and we went to the hospital actually quite a couple of times, and
33:31
they knew I had to responds before they knew I had these issues, but
33:35
they were kind of just saying, oh, it's nothing, no one is
33:38
making it up, or for one for part for a part time, they
33:44
were thinking it's all psychological. So I went I remember, we're going to
33:47
a specific war that deals with psychological pain, if you because that can also
33:53
happen. And I saw therapists about it that I talked to, but they
34:00
and I went back and said, no, that's not psychological. There's nothing.
34:02
There's nothing that we can notice that Loan is talking about that which indicated
34:07
being psychological. And I think it was again for like half a year or
34:13
something, just getting sent home again all the time and getting told it's nothing,
34:17
and that at some point we were in the we were in the elevator,
34:25
and there was an old doctor that used to take care of me when
34:29
I was a kid, because by now I'm a teenager, but he used
34:34
to take care of me when I was a kid, and he recognized my
34:36
MoMA and he said, oh, And my mom was trying to quickly explain
34:40
to him what is going on, and he just says, you know what,
34:44
there's an expert in Mannheim, which is like three and a half hours
34:46
away, and go see him. He will know he will maybe know what's
34:52
going on. So my mom listened to him and we went to see that
34:55
guy. And that's when we found out that my large and testing the small
35:02
bit that they keep on the anus has gotten longer again, so it grew
35:07
while I was growing. It grew and during this time the gangion cells again
35:14
didn't develop, which usually they do. My doctor say, I think my
35:17
doctor never had seen anything like this before. And by the way, we
35:22
were told he was a specialist. At the end, we found out he
35:24
had two other babies beforehand that had herst bons and that apparently made a miss
35:29
specialist, which was interesting. So but that's just because it is a rare
35:37
disease. But yeah, this small bit got longer again, and I started
35:43
having them the symptoms that you would get when you have a short segment hirstponse
35:49
that you it depends on, of course how long how long the short segment
35:53
is, but I would still be able to eat. I would just feel
35:57
very very ill or sometimes still, but in general I would still call I
36:01
guess, I don't know. So that's why I always kind of say I
36:06
had I had Hirschmun's twice, I had the long segment and the short segment,
36:10
because that's kind of what happened, and something I've never heard of me
36:15
neither. Like I said, I'm I'm active in the German Hirschman s Gop,
36:20
I'm active in the in the English one. Not so much in the
36:23
but I look around but in the UK Ashman scoop and I've never actually seen
36:29
a person that talked about having the same issues that I had. Yeah,
36:35
and with that came mine more operations. Oh yeah, thanks, that's fantastic.
36:43
Thank you so much for sharing that, because again I don't know if
36:45
anyone listening has has experienced the same, but i'd certainly haven't. Haven't come
36:51
across, haven't come across anybody who's had the same experiences as you. And
36:57
another another part that I wanted to to touch on as well, as You're
37:00
very open obviously about your your hirshbruns and you were saying that you've done a
37:06
presentation on its right. Yes, yes, I'm I don't know. It
37:13
started early and I don't know why. I don't even know if I've been
37:15
eating this kind of stuff, but somehow I decided very early on. But
37:21
the reason I have first problems because that's I think what kids who have a
37:24
disability, that's a lot of the question they go, they that box.
37:31
The m I guess a lot is why me? Why do I have this?
37:36
Like I remember looking at my parents and I can't believe how painful that
37:38
must have been for my parents when I was sick. I remember looking at
37:42
them, I just saying, why do I have this? Why am I
37:45
always sick? Why do I have to be the one with And it must
37:51
have been painful just for the parents to to listen to that and not and
37:57
not being able to answer. I remember my father used to say, I
38:01
wish I could take it away. I would take it away in a heartbeat
38:05
and just have it myself if you didn't. So you didn't have to go
38:07
through this. And for some point, and so for some reason when I
38:13
was a kid, I at some point just answered the question with okay,
38:16
because I will be the one who talks about it more, who helps other
38:21
people that I will use this and try to help other people that by writing
38:25
in the Facebook groups, are by getting more awareness out there. And that's
38:30
why I love this podcast. Because the thing that has bugged me for a
38:35
while with hirstbuns is when you and I would google this all the time.
38:38
I would google hirshbones and you can see all these information or information information articles
38:45
about what is hirshbuns, but you don't actually see any people who have hirshbuons.
38:49
You don't see it personality behind that. You don't see a person who
38:52
will actually tell you, hey, I have that too, and I live
38:55
like this. It's just all the foremos stuff you see, and that's important
39:00
too, But as a person it has hush bums, you want to see
39:04
other people with it. You don't want to be the only one. And
39:09
yeah, and that's kind of then I decided, Okay, I guess I
39:14
will help bring the word out. Then that's why I had got hush buons
39:19
and like I said, I don't even know if I believe in it.
39:20
It's just what my child mindset. And now I'm just budding with it.
39:25
No, it works. It works now, I think that's excellent. And
39:29
then we're very much aligned on that and trying to raise awareness. And again
39:35
it kind of circling back to what we said at the start about people feeling
39:39
alone and you know that now. I mean, what's this podcast been going?
39:45
Twenty twenty six episodes as of today, and fifteen I believed or with
39:50
Hirshprungs, and there's another couple coming up in a couple of weeks with Hirshprungs
39:54
as well, to show that there are loads of people and they do loads
40:00
of different things and it shouldn't be a case of oh I have hirschbrung as,
40:04
I can't do this and I can't do that. I mean, there's
40:07
there's several people have interviewed and several people that I would like to interview.
40:12
There's a guy called Michael Valentine who I've had a few chats with and he
40:17
has hirschbrums. He's a professional boxer. So there's there's lots of lots and
40:23
lots of people out there, so no, don't don't please, don't think
40:28
you you're on your own because there's lots of people. Again, that a
40:31
lot Laura to day you sharing their experiences, which which I think is fantastic.
40:37
And just as we sort of wrap up towards the end, what does
40:44
the future hold for you? Yeah? Oh that's a lonely questions. It's
40:52
a tricky one. I tend to ask you a lot, and it gets
40:54
lots of different responses, which is why I really like asking it. But
41:00
yeah, I do tend to ask it a lot. What are the future
41:05
of me? True? That I win in terms of so I'll specify it
41:13
slightly, so in terms of let's say, like Hirshbrungs advocacy, what would
41:19
you like to see let's say in the Hirshbrungs community, obviously more awareness to
41:24
how what what would you like to see in that? Okay, yes,
41:30
that's that's hope. Well, for one thing, this podcast, like I
41:36
already said, it's great, I also wrote that it made me really happy
41:40
seeing it because even when I googled Hirshbons or would when I would look on
41:44
YouTube, I never actually saw this podcast. So that was. It was
41:47
only when you posted in the group I noticed all this podcast that it exists.
41:51
And I do google Hirshbunds a lot because I'm still kind of this little
41:53
girl that's trying to look for people who has it or not, and so
41:58
I do do it a lots. So I think this is a great step
42:02
towards it. And one thing that would be awesome is a person on TV
42:13
that either deals with a perish one just in a sense like a TV show
42:16
or a movie things like that, a movie that you can watch and or
42:22
attatchoo movie where that person just hash ons and it's not it doesn't have to
42:27
be about hershbunks this movie, but it just has hushbuns but it's fine and
42:32
just I think I would have loved something like that because you do feel kind
42:37
of alone with it and it's not very represented out there, and I guess
42:45
stuff like that. Yes, yeah, no, definitely I am. And
42:50
there's two points or are mate on that. As we're recording here, I
42:57
think it was last week or the week might have been the week before.
43:00
I know this is strictly Hirshbrums, but Lego have released I don't know if
43:04
you've seen Lego released a character or multiple characters weird stoma bags, so they're
43:12
sort of like a stoner and I think that's I just sort of saw it
43:16
on Instagram and whatnot. And I think that's only been sort of maybe two
43:21
or three weeks, so they're starting to release bigures with stoma bags. I
43:24
know it's not not strictly Hirshbrums, but it's it's seen a similar ballpark and
43:30
just on on Telly as well. There's somebody sent something to me. I
43:35
think this was about six weeks ago, give or take that Hirshbrums was mentioned
43:40
on Grey's Anatomy. Somebody somebody who had Yeah, it might might have been
43:45
long. No, I don't think the person had it. I think they
43:50
just mentioned that it could be there. I think it was just yes,
43:52
that was right. You're right, Yes, yes, you're right. It's
43:55
but it's been getting a mention out there, which is which is all important.
44:00
But I think you're right. You know, there are celebrities that have
44:06
have ers browns, so i'll sort of go through who they are and mention
44:08
who they are and what not here. And I have contacted a couple of
44:14
them to see if they want to come on the podcast as well and have
44:17
had some very nice responses. So maybe Fingers Crossed will have a couple of
44:22
those in the future, but I won't I won't disclose who they are here,
44:25
just just in case they don't want me to. But yes, so
44:29
celebrities coming out. We do have the condition and advocating for it. There
44:35
are plenty of charities that do great work. I know a few weeks ago,
44:39
let's you had Liz Crawford on here, who's part of Reach in Canada
44:44
and America, and Carla as well, Melissa in the Facebook group, so
44:50
that there's plenty of groups groups out there. But you're right, they are.
44:53
They are tricky to find. But the more, I guess, the
44:58
more episodes we do, the more awareness is out out there, the more
45:02
people connecting with and hopefully it just sort of some spirals on like that.
45:07
But yes, no, you are, You're absolutely right, absolutely right,
45:13
and just for me, I just wanted to say thank you so much for
45:16
coming on. You've been as as you said in your opening message to me,
45:21
you're very very open about your herd brong than that's and that's lovely to
45:25
see because it's it's sometimes not not the easiest thing to talk about. I
45:30
took years before I wanted to even acknowledge it. So you're you're a lot
45:35
braver than me at twenty years old. The thing is, I don't know
45:39
if this is now going over the time and we're cool. We're cool,
45:43
okay, because it kind of startled me. I had bullying issues in primary
45:51
school and I changed. I changed school, but another of the bullying really
45:55
came from the teacher and not from the other students. But we went and
46:00
I went to this new school, and we would talk about, okay,
46:02
how will we deal with my hirshbunks because some of it was also I was
46:06
saying vipers at the time, and because of my hush bunks, which of
46:09
course it doesn't make it easy for a ten year old girl with vipers,
46:14
that's not that easy. But beforehand we kind of tried to hide it.
46:20
But what I learned from experience, first of all, if you try to
46:23
hide it, you start being ashamed of it, and you start thinking you
46:28
have to hide it. That's the one thing which I don't want. She
46:30
also with my stomach, I do not want to feel I don't want to
46:34
feel like I should be ashamed of it or anything, and the other thing,
46:40
yeah, well I have ADHD, so sometimes I jump. I hope
46:45
it's not too karaotic. We're good, We're good, Okay, my teacher
46:51
told my parents. I think Loan has to tell the class that she has
46:55
this because what kids do, and they don't do it on purpose, but
47:00
kids are kids. If they see that you're hiding something, it's very easy
47:05
to tease you about that. But if you go right from the beginning and
47:09
say I have a response, and often I use the word disability, I
47:15
say I have a disability, because of course that catches a different that makes
47:22
a bit more serious, I guess in other people's eyes. And of course
47:27
I also do it because here in Germany it's the word behind that anti.
47:30
In Germany, the word disability is now become a swear word, kind of
47:36
you call someone disabled if they're kind of stupid or whatever. And I'm trying
47:39
to really go against that, so I say, on purpose, say I
47:44
have a disability. I am disabled, just to kind of go against that
47:49
and say I'm not ashamed of it. That doesn't make me stupid. So
47:52
that swear what doesn't make any sense, And they don't really think of it.
47:54
It's just something that started happening over the years only. But yeah,
48:00
I went in front of the class and I told them, and it went
48:04
great because it wasn't a weakness because they noticed that they can't they can't tease
48:13
me on it because I've already been opened. There's nothing to find out about
48:15
it, because I went straight away and said, hey, I have hersh
48:19
one that that is a disability. Because of it, I wear diaper and
48:23
yeah, just so you know, and because yeah, because I did that,
48:30
how can you tease them someone about something if they've been so open about
48:32
it. Yeah, you want to make that sense exactly. And even if
48:37
they tease you, if you teach your child to not be ashamed of it,
48:42
even if they tried to tease you, it won't hurt that much because
48:45
it's what you are. It is what you have, and unless if you
48:51
try to hurt it, it is more of a vulnerable If you try to
48:53
hide it, it's more of a vulnerable subject, and it will hurt way
48:55
way more because you are taught to hide. And then something is discovered that
49:01
what you have being taught to hide, so that's even worse, gets worse
49:06
and worse. So usually what I tend to tell parents when I talk to
49:12
them over the Facebook groups is two things which kind of came out through this
49:15
podcast. The one is, try to teach your child to be proud of
49:19
it and not to hide it. Don't try to hide it in front of
49:22
other kids. Don't tell your child not to tell them all whatever. If
49:27
your child decides not to, it's their decision, of course, But try
49:30
to motivate your child to talk about it openly because there's so much positivity that
49:37
comes out of that. And that's the one thing that I try to say.
49:42
And the second thing is, by the time when your child starts to
49:47
ten and eleven starts to understand that's there. Usually nine, ten and eleven,
49:51
that's usually the age before that, it's normal having your susubes. But
49:55
in that age you notice, Okay, I'm a bit different than other people
49:59
because I have this, or I have Tommy eight more, or I'm more
50:01
sick. That's the age why you start to notice that you're a bit different.
50:07
And in that age, tried to find someone else in the same age
50:13
as your child that also has hush boons. And back then it was a
50:16
possible like there wasn't something like Facebook or whatever, and it can be.
50:22
It is still difficult nowadays, but you can't reach out to Facebook and if
50:27
you send a post and see a my kid is nine, is there anyone
50:30
else who has firsh bungs. Maybe we could set up a play date and
50:36
then just see if it works, because that's what my parents did with me
50:38
when I was thirteen fourteen fifty a bit older and I didn't even know I
50:45
needed that, But I went to England because my parents posted in the English
50:49
group were going to England? Are there any people out there that will have
50:52
frinspoons in the same age as Lowen? And then I met two guys,
50:58
Jack and Ed and they were awesome, Like we talked. We just went
51:05
we didn't even go anywhere, and said we will sit down and just talk
51:07
about her shpuns. That wasn't the goal. We went actually to an attraction
51:12
part. Me and Jack went to attraction park and just played there and during
51:16
that we suddenly started talking about our issues. Where I was I can't say
51:22
what he is was still here, but I was talking about how I still
51:27
wear diapers and how I sometimes approve my bead At age thirteen and that's embarrassing,
51:32
and it just gave me a feeling of understanding. Just everyone knew what
51:40
we are going to everyone knew what was happening, and the same thing with
51:45
Ed. With Jack, I'm not in contact with anymore, but Ed,
51:47
me and Ed still in contact our snapshat and we every time I meet him.
51:52
I don't know I need it, but every time I meet him,
51:54
it is so refreshing to just hear that he has the same issues. It's
51:59
just so refreshing to hear to have a person right next to you and talk
52:04
about the same issues that you are, or just a person that will understand
52:07
it because at some point they had those starts too. Yeah. Yeah,
52:13
So its really those two things I think are really important and if it's possible,
52:20
yeah no, They're there two incredibly important points, and I think that's
52:23
a fantastic way to finish on. So thank you, Thank you so much
52:29
for sharing your story and sharing all of your insights, and I wish you,
52:32
wish you all the luck in the future. Thank you for having me,
52:39
Thank you for listening to the podcast. Find us on Instagram, Tom's
52:44
Underscore Hirshbrun's Underscore podcast. Listen to previous episodes on Spotify by searching Tom's Hirshbrung's podcast