The PIP-UK team interview Stuart about his Poland Syndrome journey and how he feels about the Poland Syndrome Community Register.
Okay, welcome, everyone. We’re back in our series of talking about our global Poland Syndrome Community register, soon to be launched. And I’ve got the wonderful Stuart Cameron here with me today from lovely Australia. So thanks, Stuart, for joining us today. Really appreciate it.
Thanks, Sam. Thanks for having me.
Awesome. Okay, so people know now the questions are the same across the board here. But Stuart, it would be really lovely if you could just tell us about your Poland syndrome journey so far.
Yeah, okay. It’s a long one. It’s nearly 50 years of it. It didn’t really affect me too much as a youth apart from being I think mentally probably really, really, I struggled mentally with the physical appearance as a young kid. And feeling inadequate. I’ve got a right hand, the pec muscle, gone. And so I always stood out a little bit different and I got, I got teased at school, I got bashed up at school. Fortunately, I was able to manage pretty well, I didn’t get teased too much after that. But then as I grew older, I was always physically quite fit. And while I was a state champion cyclist, so, New South Wales, in Australia as a state, yes, I was a state champion cyclist, silver medal at the nationals, I nearly got nearly to the Australian Institute of Sport. So physically, I was actually pretty good, that’s like, late teens sort of time frame. And I got to a point in time, where, when that man was cycling, on the same age as Lance Armstrong, you get the idea of what was going on at the time, drugs and stuff. And I thought I’m not, that’s not part of me, because I’m not someone that wants to cheat, you know, and yet, took on a role as a child at the time as a bicycle mechanic. So worked with my hands, and now I’m a podiatrist, I’ve been a podiatrist for 25 years. However, now, we’ve got to the point now, in my life, where this old chestnut ain’t working too well anymore, because this one doesn’t do anything. This one’s done everything for so long. It’s falling apart. And so it’s a bit of a struggle. So I’ve got to work out what to do with my life. So my Poland Syndrome journey, I guess is a bit strange, because, like, how can you achieve so much in an athletic career? Yet you’re still now, you’re stuffed.
Yeah. Your body didn’t know at a young age, you pushed your body quite a bit younger because that’s not like Paralympic sport you’re doing that’s just like…
I got offered to go to the Paralympics. And I turned it down because I felt guilty because I was as I was an able-bodied, cyclists, and I thought, that’s not fair. But I could have gone to Atlanta. And actually, I would regret not taking that up, because it would have been a good experience. But I just feel guilty about it. And it’s sort of a strange juxtaposition of, yes, I’m disabled, but on being able-bodied people, and then I thought that’s not fair on people like they’ve got one leg, but I didn’t understand the whole… there are all these different categories of disabilities. I didn’t actually understand a lot of it, I’ve never looked into all these different categories and I… Yeah,
It’s really common…
Like 20/20 hindsight, you know?
Yeah, absolutely. Like I talked to a lot of people across the community who don’t think to feel that they would ever qualify for the Paralympics and you know, it’s just not the case and it’s just getting that knowledge out there and having those role models that you know, we do have a couple of them now in the Paralympics, you know, Kim Daybell springs to mind but if you don’t know that, then you know, it can be difficult to take that leap.
I think if we’ve got some ambassadors to put Poland Syndrome on the forefront, there’s so Paralympics is a great platform to get Poland Syndrome out there and show people, you know, that we may have disabilities. And yes, we do have our struggles. But hey, we can still do things. But yeah, we’ve still got our struggles. It’s not particularly easy for a lot of us. And it’s a complex syndrome that we don’t really know enough about. I think we need more research into it. And I’d love people to get on board and support some sort of research for it to work out what’s going on. Because in my experience of over the last 12 months, as you know, Sam, I’ve been looking into and reading what’s going on with it, and then there’s some crossover syndromes and things like that, we might be getting complicated with. But we so need research into this. But like I said to you earlier, before we were on air, I’ve never met a doctor in Australia that knows what Poland Syndrome is. And I’m just about to turn 50. And I’ve been to a lot of doctors over my time. And they’re like, Poland Syndrome, what’s that? No idea. And so he tried to explain to him, and you got to go over and over and over and over. So can we get some, it’s nice to be recognized and the medical professional needs to know more about what this syndrome is and the variances of it because there are lots of variances. And I know there are crossover syndromes that might be misconstrued as Poland Syndrome. But we need that education in the medical profession. And, the only way we can do that is we need positive research to get down to the nitty-gritty, and then we can present that and go forward with the medical profession.
Absolutely. And obviously, for us, the first step for that is to launch this register, so we can start tracking some data for Poland Syndrome and…
Absolutely. I think the registry is a great, great initiative. I’m totally on board with it. And thank you, Sam, so much for your work and the effort that you’ve done. And I think the more we can get on this register, the better. Because it will just help paint that picture. Like we were just talking off-air before about, you know, all the data, you’ve got someone on board to try and help you out. And it’s scary. It’s mind-blowing how much data you got to go through and it research it. You know, it’s hard work. But I think the more people that can register, then you got, your statistics. The more numbers you’ve got, the better the stats are, the lower the confidence interval. That’s a stats thing. Anyway, I wasn’t very good at stats at uni. It’s about the confidence interval. So the more numbers you got bigger the numbers, the smaller the confidence interval. So you got a better chance of saying this is for sure. Rather than we’re not so sure. So it’s not so sure. Yeah, we’re pretty sure. Yeah, we’re very sure. Does that make sense?
Makes sense. Yeah, absolutely.
The more people who can get registered. Absolutely there are. Yeah. So I encourage everyone out there to get on the register. Yeah.
Fantastic. Fantastic. And who knows, one day down the line when we’ve got all this data in the register? I know you’re really keen on doing some research yourself, aren’t you? So if that can guide some of the research you do next then that would be amazing, wouldn’t it?
Absolutely, would be fantastic. And then that will be basically my go-to to try and start something, would be, this whole register would be awesome data for us to try and do something. Obviously, we have to get a stats person in to help me out.
Well, don’t ask me that’s definitely not me.
But I do have the medical background to sort of know when to tell the stats person where to go.
Yeah. Oh, no, that’s fantastic. Absolutely fantastic. And it’s just joyous to me that there’s so many people around the world like yourself that, like, share the passion for the research and the data and what we need to do to finally give everyone in the community what they deserve, which is the right treatment at the right time throughout their lives.
Yeah, well, I think for me, it’s not really about me now, anymore. Maybe it was 20 or30 years ago, but now for me, it’s all what’s my legacy? And what can I do for future generations? And I know you’ve got a young one. And he’s 13, right? And then just if they can get support at an early age and some sort of intervention, and like some physical therapy to just help them through, it’s got to be a positive thing. But we need the research and the data to actually prove that. It’s because so many people just go Poland Syndrome, that’s not a real thing is it? Really? Got a small hand. But it’s like a throwaway thing. It’s more than that. And we need the research to back it, and we can help future generations. It’s not going to go away. And we don’t know whether it’s congenital or not. There are issues going on there… can it be passed on? We don’t really 100% know that. We need money and funding for research.
Absolutely. Oh, it’s wonderful. I could talk so much more to issue, and I’m sure we will in the future about this. And I’m so so grateful that you lending your support to this and for your time today. So thank you very much for joining us.
That’s right, Sam. I can talk underwater now. Have a lovely morning. I’ll have a lovely evening.
Yeah. Thank you.