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What about PS? A Poland Syndrome Podcast
What about PS? Hosted by Giselle Barbosa, PIP-UK Ambassador, Entrepreneur and Athlete. The What about PS? podcast aims to shine a light on Poland Syndrome, a rare disease, and the lived experience of the Poland Syndrome community.
Each episode, Giselle will explore inclusive and varied experiences of people living with Poland Syndrome with a variety of guests, from Paralympian Kim Daybell, Former Cricketer Lewis Hatchett, Australian Gymnast Clay Mason Stephens to medical professionals, bra companies and the most amazing members of our community. With engaging interviews, thought-provoking discussions, and the inclusive experience of the Poland Syndrome Community. The What about PS? podcast promises to be a must-listen for anyone curious about Poland Syndrome. Including the Poland Syndrome community, their friends and families, medical professionals and the rare disease community.
"We're thrilled to be launching this new podcast series and can't wait to share it with our audience," said Sam Fillingham CEO PIP-UK. "With Giselle Barbosa’ss expertise and the insights of our guests, we believe this podcast will become a valuable resource for the Poland Syndrome Community and medical professionals, providing them with the information and inspiration they need to live well with Poland Syndrome and find out more about treatment.
Listeners can tune in to the What about PS? podcast on Apple,Spotify, Amazon, TuneIn + Alexa. For more information and to listen to the latest episodes, visit pip-uk.org.
About PIP-UK. PIP-UK is a registered charity. Our activities include 121 engagements with individuals and families so we work directly with those affected. We also host community events that bring those affected together. We also run advocacy & wellbeing services and clinics with health care professionals to encourage their involvement.
There are no specialist doctors for PS, so for our community this means diagnosis & treatment is difficult. Parents are accused of mistreating a child when shoulders are hypermobile, teenagers go through years of torment, and adults live with debilitating mental health issues due to a lifetime of hiding their bodies. Our work is about supporting this marginalised community and for them to be treated equally against other disabilities, raise awareness and connect the community.
Poland Syndrome is rare limb difference you are born with, the body is affected on one side where muscles, bones or organs are absent or underdeveloped.
For media enquiries, please contact Sam Fillingham, CEO at PIP-UK. Contact on 07708 209874 and sam.pipuk@gmail.com.
What about PS? A Poland Syndrome Podcast
Embracing Difference: Stories of Courage and Community
Karen and Gift's powerful stories of living with Poland Syndrome will leave you moved and inspired. From opposite corners of the world - Devon, England and Uganda - these two remarkable women share their journeys through isolation, self-doubt, and ultimately toward acceptance and community.
The conversation begins with raw honesty about discovery. Karen has known about her Poland Syndrome since birth, affecting both her hand and chest, but spent years hiding her difference. Gift's realisation came with puberty, thrusting her into years of psychological struggle as she navigated school environments where her body was suddenly exposed and questioned. Both women speak candidly about the emotional toll of feeling different in a world obsessed with sameness.
Their lives changed dramatically when they participated in an inclusive fashion show organized by Birmingham Children's Hospital and PIP UK. For the first time, they met others who understood their experience without explanation. Karen, at 24, finally met someone else with Poland Syndrome - "It lifted something from me," she shares with emotion. Gift, on her first international journey, found a space where she could "let my heart out about my feelings and feel understood."
The discussion expands beyond personal stories to address broader issues - the fashion industry's claims of inclusivity versus reality, the challenges of finding clothing that fits uniquely different bodies, and the psychological impact of visible differences that medical professionals often overlook. Their wisdom for younger people with Poland Syndrome resonates powerfully: "Different is okay and beautiful," Gift emphasizes, while Karen adds, "It's not as bad as we think it is."
What emerges most clearly is the transformative power of community. Both women express deep gratitude for finding connection through PIP UK, emphasizing how shared understanding has helped them navigate difficult days. Listen as they remind us all that visible differences may shape our experiences, but need not define our lives. Join us in celebrating these voices that remind us: you are seen, you are heard, you are not alone.
Please follow the pod and rate the show and leave us a review, we would love to hear from you.
You can find out more about PIP-UK and Poland Syndrome on our website:
https://pip-uk.org/
Follow us on social media:
https://www.instagram.com/polandsyndromepipuk/
https://www.facebook.com/pip.uk.org
https://www.linkedin.com/company/pip-uk/
https://twitter.com/Polandsyndromep
https://www.youtube.com/user/pipthecharity
https://www.tiktok.com/@polandsyndromepipuk
If you would like to appear on the podcast or share ideas for future topics, please get in touch pip.charity@gmail.com
hello and welcome everyone to a live special recording for poland syndrome awareness day of what about ps a poland syndrome podcast. I'm sam fillingham, ceo of pip uk, and I am delighted to be stepping in for our usual wonderful host, giselle, who sadly can't make it last minute. The podcast what About PS was launched on Poland Syndrome Awareness Day in 2023 and it's a space where we share real stories, experiences and dreams from our amazing PS community, and today I'm excited to be joined by two amazing guests. We've got Gift from Uganda and Karen from Devon, and both Gift and Karen have lived experience of Poland syndrome and they took part in last year's powerful fashion show in Birmingham for inclusive fashion. It was Gift's first visit to the UK, andaren and gift both first time of meeting people with poland syndrome, and so it was a beautiful occasion, and they're both passionate volunteers for pip uk and also raise awareness online and in their own platforms and communities, which is always wonderful to see. So welcome, gift and karen hi.
Speaker 2:Thank you for having us amazing.
Speaker 3:Thank you for having us.
Speaker 1:We're happy, yeah, absolutely happy, to have you here, especially from so far away in uganda as well. Thanks, gift. Okay, so let's make a start then. Um k Karen, first of all, it'd be wonderful to understand more about when you first learned that you had poland syndrome and how it kind of shaped growing up, and your understanding of your own body, I guess um, so I first found out I had poland syndrome.
Speaker 2:Well, my parents found out when I was born, so I was I'm hand affected and chest affected, so obviously the hand part was very obvious for them. Um, none of the surgeons or doctors knew what was going on. They had never heard of poland syndrome, which is obviously a recurring theme that I think we all go through. Um, but I think I first had the understanding when, probably when I reached like primary school and I was looking at other kids and kind of socializing more, and then I realized like, oh, hang on, everyone else has two normal hands. I guess I don't know.
Speaker 2:Um, so I think I just kind of like I've always understood, I have it, but I just kind of like I've always understood, I have it, but I never kind of knew what that meant in the community or in society. I didn't have a good understanding of that until I reached puberty and then the breast side of things started to become more obvious for me. But other than that, I think I've just always known and I if like finding out when you're a kid, I think it helps you understand it more, but it never prepares you for how other people will react and if they're going to understand it yeah, that makes sense.
Speaker 1:So did you always have the language of it when you were little?
Speaker 2:like you knew what it was called and you you could sort of kind of own that and explain that to people as you were growing up yeah, my parents were really good at just kind of always interacting with me in a way of saying like, look, you are going to get people looking at you, you are going to get people asking you questions, but you have poland syndrome. It's a good thing to tell people and just try and not let it affect you too much sort of thing. Um, they were very clear on like other people might not be as understanding, but we always did the analogy of um Jeremy Beadle had it and he had a smaller hand. That's how we used to explain it to doctors because they were of an age of people who knew who Jeremy Beadle was. I personally didn't, but all I knew he was that he had poland syndrome. But you know it worked. And other people then kind of went oh okay, yeah, I know what you mean and we went on from there amazing.
Speaker 1:It is really helpful to have that reference and I do still try and use the Jeremy Beadle reference, but reading the room of the age, because it's very quickly losing its relevance, sadly, isn't it, but luckily we have, you know, lots more lovely people to refer to now as well. Yes, and same for you. Then, gift, when did you first learn you had poland syndrome and and how did it shape sort of growing up and an understanding of your body?
Speaker 3:Oh, thank you, Saman. I first discovered the difference in my first life, which is found as Poland syndrome, in 2012. And I joined just a different level of education and I'm in the first year and it's when I hit puberty. I had no divorce. So when they divorced in 2012, that's when I realized the rate at which I was growing was quite different. And at first I didn't care. Like I said, I didn't care. I can say I didn't care. In my mind, I thought, just like they always say, it is normal to have a difference the press I always thought it's okay, until this is part of the story until one day I was just sitting with a deskmate and I did something wrong. Sorry, I was just sitting with a desk mate and I did something wrong. Sorry, I did something wrong.
Speaker 1:And then she we lost her Lost gift. For a moment I was hoping she would come back sharing a beautiful story. Yeah, um, okay, we'll come back to finishing that story off with gift. So interested in the different experiences and different ages everyone found out. Um, it'd be really good then, karen, to understand. Was there kind of a specific moment or time in life where, um, you felt like empowered to talk about it or like be more confident about it?
Speaker 2:yeah, I think it's quite sad to say, but it really wasn't until a couple years ago when I first kind of stopped pulling my sleeve down and stopped, you know, hiding it, I guess I was. When I was a kid. I had no idea that there was anything different about me. I just ran around, I was a happy kid and it was fine. It was just my hand. So that was something that, like people could understand that oh, it's just a bit smaller, that's fine. And then when I hit puberty, it then changed into something different and I was, you know, missing a breast as well. That took it to a whole new level for me and I think that knocked my confidence down quite a lot. Um, and then I really want to say it probably wasn't until just after lockdown. I kind of realized like there is so much more important things going on, like it really to me put into perspective that like I'm not that different, there's nothing that much wrong with me. I was in university at the time and it was incredible to see that people didn't care as much. Like I was meeting these new people and they just didn't care. They were like you're fine, like it didn't matter to them.
Speaker 2:And then I think after that we were in lockdown and I had a lot of time to reflect and I just thought why? Why continue my life hiding it? I was 20 then and I just thought I can't, I can't go on like this anymore. So I started to just talk about it more. I was posting on Instagram just a little bit, talking about Poland syndrome, just getting people used to the idea. And then obviously, our lovely Becca. I got in contact with her and we were talking about it and I saw how confident she was and I thought if she can do it, then so can I. And it didn't matter and I mean, obviously we're all in this different spectrum of how we're affected, um, and I thought I have a really unique point of view of being both hand and chest affected that I should talk about it and I should get other people talking about it as well, if I can that's amazing.
Speaker 1:I mean, you say it was like later in life for you, but you know it doesn't come till much later for some people. So beautiful that you know that that's happened in your 20s and you're able to, sort of you know, carry that confidence through to the rest of your life. Yeah, I hope so, absolutely. And gift, we lost you for a moment. You were telling us about your desk mate. You want to go back to that?
Speaker 3:yeah, I would like to go back to that. I'm sorry about what happened. Lastly, I would share that my growth has lowered my esteem so much that at a certain point I began to relate with other girls because they understand what it should be, the normal shapes and now, realizing mine, they would easily tell that there is a difference and that the conversations would bring me down. So throughout the years, the six years, it was really a roller coaster for me. It was. I can through stress, depression and mental illnesses and feeling that made me go through some kind of life. However, I had some support system. I was in a good school that had a counselor and sessions where I could have a one-on-one counselling and all that to get the solution.
Speaker 3:But for the six years that I finished in that level it was really not easy Because I didn't want to hear comments that they would make about me because they would make me not to study. I didn't want that. I wanted to achieve academic balance. I wanted to keep away from the negative energy. So it was really not easy, but with the support system around me and my teachers and the counselors, I went through it, though not easy Because every time I would go to bed. Most of the times I cried. I was told of how I would go to the bathroom the next day to bathe with the other girls and knowing that they would question me. So sleeping every night, knowing that the next day I would have to face the same thing, it would be a worry for me day in, day out, because we had open bathrooms and that would make it harder for me to hide. So I was trying. It was really not as better than described.
Speaker 1:Thank you for describing that so beautifully. I think we are struggling with your volume a little bit. So I think on the next question it'd be good to maybe drop your camera and we might get a clearer sound on your voice. We did hear it, but the volume was just really quite low. But thank you for sharing that.
Speaker 3:That's going closer to me.
Speaker 1:Okay, yeah, that might work for the next one, thank you, Thank you. Okay, and turning back to Karen, then you both took part in the beautiful fashion show last year. I would love to hear, one year later, what your reflections of that experience were for you.
Speaker 2:I can't believe it's been a year. It really doesn't feel like that long ago. Honestly, looking back, that is probably the most impactful and probably the most courageous thing I've ever done in my life. I was, I think. I don't know if you remember I was terrified, do you remember? Yeah, and I, looking back, I sprinted down that runway. I did not take my time, I was up and back in probably a minute, but, um, it was just so fun to. It was my first time ever meeting anyone else with Poland syndrome. I was 24. I mean that's. It's incredible to realize that it took me that long. Um, but it was just.
Speaker 2:It was a beautiful experience and I mean even watching the younger kids in a part of the hospital take part. That was amazing to see that at that age they have such confidence. It was so nice to see that, being in a community where people are like you, how that can affect your outlook on life and how you go about your day-to-day business. I think, just like looking back, it was something that I mean I want to do it again. If we can do another one, that would be great. It was just incredible to meet everyone for the first time and finally get to sit and talk about our experiences and the whole process of getting ready together and just we were all in it together and we were united.
Speaker 2:And I think that's the first time I'd felt that properly to be a part of this community and to actually be with people and be like okay, well, if we're all gonna do it, like we're gonna be fine and we'll be in it together, and then even just like afterwards, I was on this like high. I was like jumping around, going. I can't, I can't believe I actually did it, even with the blisters on my feet which were painful, but it was just I didn't feel like I had to hide, I walked down and I didn't feel like I had to be ashamed of anything anymore and it that all kind of lifted from me. I I think, and hearing your speeches introducing everyone, and just I've never felt so united in my life and I think that's something that was really important.
Speaker 1:Yeah, absolutely. That's made me really emotional just thinking back to that moment. You're right, that being together was was so special and for people listening that to this recording and the lovely people that are in this room who might not have heard about it or known about it. It was um, an inclusive fashion show arranged by Birmingham Children's Hospital, and for the first time, they allowed adults to take part in the fashion show and invited us and the Poland Syndrome community to take part and to connect with a wonderful Malawian fashion designer, lily Alfonso, to design some bespoke clothing for our Poland Syndrome ladies taking part. And we had a film crew with us as well from Smiley Charity that also documented it. So we'll be sharing those videos again this week on socials because they're amazing as well. But, yeah, it was a super special event and it's lovely to hear, karen, that like a year on those reflections of like the things that it lifted for you and changed for you for you like it's.
Speaker 2:I think even with when we had obviously the difficulty of not being able to get the outfits to us for the day, that obviously I think we were all a bit stressed for that.
Speaker 2:But then knowing that we could do it again the following Monday and actually get to wear the clothes was, I mean, wearing them, meeting Lily and just doing it again I felt being in the. It's the first time I've never had to like adjust the clothing on my shoulders and they fit me perfectly. And it was really nice to know that there is someone out there who is really looking at changing how fashion is and making sure it is inclusive for everyone and it fits you right. I mean having um clothing fit you and getting it tailored. That's so expensive and not everyone gets like has that luxury to be able to do it for everything you wear. So I think, like finally getting to feel comfortable in the clothing you're wearing and just feel like it was made for you and actually worked for your body was really beautiful and I think that is something I'll never forget absolutely, absolutely.
Speaker 1:Me too, me too just being around all of you like witnessing that experience and seeing and feeling all of that was super special, a real privilege and gift. Do you want to share about your experience of the fashion show? Yeah, I was waiting.
Speaker 3:Yeah, I was just waiting for my time because I was just reflecting back and remembering the whole experience of it, and I think it is still one of the best memories that I have, one of the best experiences I've had. It was my first international flight. First of all, that I had been the best of it. The trip touched me. I remember, before getting on the floor for the cutoff I don't know whether you remember, samantha, but I cried, and I was not crying because of my condition. Me at that time was crying because it was joy. It was joy, it was joy, it was joy. It was the experience that overwhelmed me and I felt happy, extremely happy.
Speaker 3:After the fashion show, I was very happy, above all, to be in a space that I felt understood. Above any other thing, I was happy about everything, but above all, I was happy for being in a space where I feel the people I have can understand me, because all through my life I had felt like no one really understands what it means to live a life where you have colon syndrome, a condition which you're not seeing most of the people around you having. So even when I would tell them, try to explain, I just felt like they didn't understand and a moment, the time we had together at a fashion show was the best for me. I felt like at last I can let my heart out about my feelings and I can feel understood. And so I was very happy.
Speaker 3:And I was very happy With the girls Karen, I was happy to be with you with Becca, with Grace. It was such a nice experience to see us not even about me myself, to see other ladies able to put on their comfortable in a comfortable way clothes that they can move with confidence in and they don't have to worry about what is in the audience, because we could say we are one, we have something to share, we can relate with each other, and it just left a lot in my mind. I'll never forget about it. I just wish I could take part in any event that we have with the PIP UK charity, but I wish I could be there all the time and just relate with everyone that is having peace, because there is just peace. That it brought to my heart and I believe at least it brought something that will never be forgotten in everyone's heart that experienced or took part in that show.
Speaker 1:I was very happy and I thank you for that it was wonderful to have you take part in it and hopefully we'll all get a chance to again one day. Um, I'll never forget sort of the fashion show gift, seeing your confidence grow. You know everyone was kind of a little bit worried, karen.
Speaker 1:You got really worried like you said I was shaking, really, really shaking. But I'll never forget, sort of seeing all of your confidence grow throughout of the evening and the impact you know that had on you just on that night. Um, yeah, really special, special sight to behold. So yeah, let's invite in more of that for this community definitely absolutely um and just turn into sort of fashion and beauty industries. Um and karen, do you feel like it's ready to embrace like differences and inclusivity at all? What's your sense on that? I?
Speaker 2:think it says it is.
Speaker 2:I don't think it is. I think, necessarily. I think designers might be ready for it, they, but I still just don't know whether it is that box they have to tick. And they have to do it to stop themselves from being under negative press. Because I think it is starting to come into light a bit more that clothing isn't accessible for everyone and there are so many things.
Speaker 2:I'm not sure if you saw it, but Primark have released a accessibility range where it's got like zips on the side and bras that have zips or like poppers. I saw that when I was in Cardiff. They had a large range of it, but it still wasn't something that was ready for everyone. Um, I think, like, designers want to do it, but there's always going to be how society will react and if it's actually going to do well, if it will sell. And then there's that aspect of you have to make it affordable for everyone, because if you're going to get designers doing it, then they might not make it accessible because they've had to do more alterations. It could even be more expensive than regular clothes. So I think they say they're ready.
Speaker 2:I don't really think they are. Um, I mean it would be nice. But I mean, I don't think I'll ever get a jumper where I don't have to roll the sleeve or cut the sleeve or, like this cardigan I'm wearing, it always falls off. I have to like either buy it a size too small and then it doesn't fit me properly, but just so it doesn't fall off on one side. That's something that I don't think will ever be, or not in the next few years. I don't think that'll be ready for society.
Speaker 1:I think that's a really fair reflection and gift Gift the same for you. What are your feelings on the fashion and beauty standards and whether it's ready to be accessible to the Poland Syndrome community?
Speaker 3:I think we have to fix the community With this looking at each other as humans and pick out appearance. Sometimes some people forget looking at humanity and instead look at the outside, and that's what creates a mindset of this one is okay, this one is not, or this one. So when we even pick out some clothes, just like any other person can put it on, really someone wants to look out for what is not right and that has to me. It has shaped my choice of clothes when I go out. When it comes to fashion, I think the biggest percentage of the people is those who have not come out, appreciate the differences, the differences of people, and understanding that it's okay for another person to be different and the world of fashion. When we go out, we have those who are ready to accept that, yes, we have differences and so we should cater for this other group whose bodies is in this way. But then we have another group in our society which doesn't have a feeling for these people in a certain way. So let's cater for them. You either fit in what is there or you don't, and so I feel the world, the fashion world and the concept of beauty outside is different in different people's minds.
Speaker 3:Personally, I struggle. Sometimes I've journeyed through it, but sometimes I struggle to find if something is trending, for example, and it's open, showing that upper part of the body, and you try to explain to the tailor or to the owner of the boutique, can we change this to what can fit my chest? And the response is you either take it or you don't. We don't have the time, just pick what I want for you. So meaning they're not ready to take it up and cater for the change or the differences in the bodies, the change or the differences in the bodies. But I accept that we have some people who so. Then as long as someone is human, then the physical outside appearance really doesn't absolutely.
Speaker 1:Yeah, thank you for sharing that. And I was just reflected on um. I've just been to India and in India you can have all your clothes tailored very cheaply and bespoke to your body and yourself, and it's a beautiful way to experience clothing there, because I've never experienced anything like that where you can just pick up a piece of material and take it to someone who will measure and make it to exactly how you want it to be, for very little. I mean. I had a kaftan made um for about 10 pounds I think it was all in all for the material and to have it tailored and it just. I guess it gives me hope that you know there's there's cultures and there's people and there's ways that are accepting and accessible to make clothes just for us.
Speaker 1:I think it will take a lot in the UK for that kind of change to come in um, but I guess it gives me a bit of hope and maybe, karen, if you put India on your list to visit, go and get loads of clothes made, I might have to put it on the list. Yeah, absolutely, absolutely, oh, wonderful, okay, moving on um. So I wanted to understand if I'll go to Karen first, if you could send a message to your younger self or a young girl, just finding out about her syndrome or coming to terms with it. What would you say?
Speaker 2:I think I would. It's really difficult because I wish I had someone to say this to me when I was younger, but I think I would just say just live your life it. It really isn't going to affect you that badly in terms of how people see you. You're going to get a few comments, but they're not worth thinking about, they're not worth dwelling on and that is something that's, I think, quite rich to say because we're all going to dwell on it. I think the negative comments stick with you worse than the positive ones. But I wish I could just tell my younger self to just try and, like I don't know, see the world in a different light and just treat people all the same and just hope that they're going to do the same for you. It didn't happen for me, but hopefully there are just people that I mean.
Speaker 2:I remember last year, when we did the um festival and we were in Birmingham and my dad came and we played that video, I met a young girl and I cannot remember her name, but she was. She was the most adorable young girl I'd ever seen and when she saw my hand she looked like she was about to cry because she had a smaller hand and I walked with her in the little fashion show we did and I just said to her don't hide it. There's no need to hide it. It's people will get used to it. It's not something that they're gonna hate you for. You're not going to experience much negativity around it. They will be fine.
Speaker 2:Um it just you just have to believe it. You have to go about life and believe that it's not as bad as you think it is. But I remember her laces were undone and I offered to do them up for her and she was really shocked that I could do laces and that was something that, yeah, it took me a long time to learn, but you get there and it is going to be OK. Like it's really not as bad as we think it is in the moment when you're that young.
Speaker 1:I think that's a beautiful message, karen, to you know, a your younger self, but B those young ladies out there, and also for you to have had that moment with a young girl at the festival last year and you know she's got a small hand, sorry Just that moment will have made more of a difference to her, or to her parents and to the people around her, than you'll ever know.
Speaker 2:I was crying on the train on the way home with my dad. I was. I just couldn't believe that I actually got to meet someone and I got to. No, I don't. I, I think in the moment I don't think I made an impact, but looking back, I think I did and I hope that it's something that we can all carry on and just like be more positive about it and just hope for the best with everything.
Speaker 1:I think yeah, absolutely gosh, I'm a great host, but it just, you know, it's a really good reminder this time of year of how important this work is, because if we don't keep doing it, we don't get to have those moments. Yeah, definitely, and you know it's. It's hard, this work it's. You know, we've got a few people in the room today and it's really hard to keep all of this work and this community going, and it's moments like that that just remind me why it's so important to do so.
Speaker 2:Thank you sharing that reflection I think we might have lost gift you might have.
Speaker 1:I think she's coming back, so hopefully she'll be with us in a moment and we can ask her the same question around a beautiful message oh, she's back, my gift, welcome back. Thank you, welcome back. So we're just moving on to um. Do you have a message for your younger self or younger girls with poland syndrome that you would like to share?
Speaker 3:so much, so much. And I would say different is okay and beautiful. It's easier said than lived, living it is lived out. But if I knew that, then, if someone told me that, then I think I would have dealt with what I went through differently, dealt with what I went through differently Because I always felt like that the difference was not worth bringing out. Actually, in growing up I always told myself no one should ever see me Like how, this should not be seen outside. And I would tell my younger self that everyone has their struggles, even the bullies, even those that you fear. They have their struggles, really, only that theirs are not seen and yours is seen. And I would tell still my youngest so beauty is beyond the boobs and focus on what is the mind and what is outside, and so it can change more and bring better to you than focusing on what is on the outside If you do the work in the inside. Yeah, I think that's what I would tell my youngest.
Speaker 1:I love that, thank you. Thank you for sharing, yeah, and then I guess it would be good to know from Karen, like you know, there's good days and bad days, isn't there with this rare condition and with life in general? Um, and it'd be nice to know, if you don't mind sharing, how you support yourself on days when your confidence is harder to find.
Speaker 2:I'm very lucky to have a good support system around me and friends that have been with me since day one. Like I have friends for over 20 years now and I've got my family and I think they're the people that bring me up. I still struggle to do it myself, but having my friends, my family and my partner with me um sorry, it really does kind of bring me back into myself. I think a bit more and it makes me realise that, like Gif just said, beauty is only skin deep, like it's what is really what's on the inside that counts. And I think having my support system around me and I can just message them and say I don't feel great today and they'll come up with loads of reasons why I should and I think back to the things I've done with you and with the charity, and that makes me feel a bit more confident.
Speaker 2:It makes me think like I'm not doing this for myself anymore, I'm doing it for everyone else and that brings me up and it makes me feel a bit better and I mean we're all gonna have days where we feel like crap and we're all gonna. I mean, other than poland syndrome, my health hasn't been great lately, so I think like looking at that makes it 10 times harder for me most days, but it's still. It's not about me anymore. I just I'm not. I'm trying to be more selfless and just think about like there's so many people I can help by posting on TikTok and posting on Instagram that even if I'm not reaching thousands of people, I could reach that one person and that that gets me out of bed and that makes me film a video or just write something yeah, and that makes such a difference and that's lovely to to hear that.
Speaker 1:You know you have got the most wonderful support system. I've been lucky to meet your sister and your dad and your partner. You know see their support at all the events we've done together.
Speaker 2:Now they are a beautiful support system my dad still talks about your speech and how incredible it was at the fashion show. He loved it. That's the first time I've seen my dad cry in years at the fashion show.
Speaker 1:Oh, my gosh. It was really lovely for your dad to have the opportunity to meet others. You know other parents and families and everything, and the doctors. It was lovely to see your dad have that experience as well.
Speaker 2:I think as well like we, as, like someone with poland syndrome, I always used to think it just affected me, but my dad was, and my sister would with me through it and it affected them so much. So I think, like the support that we have in the community, it's not just for us, it is for our families and I think that makes more difference than you realize as well. Like it's not just for us, it is for our families and I think that makes more difference than you realize as well. Like it's just incredible to have people that they could talk to if they wanted to, or just like see what we're doing this weekend.
Speaker 1:It's just, it's incredible to have everyone around us, and not just for us, for our families as well you're right, it's really powerful for family members to be around and hear and meet others, because you know they probably think that, well, it's not about me, you know, I'm just caring for a part of a family with the outside, but so part of it, and you know she, when George was having his operations when he was little, she was desperately thinking of these ways to, like, adapt his clothes and she was putting bandages on his toys and things, you know, because she felt all of it as much as we did. And you're right, like it's really important to remember the wider family, isn't it?
Speaker 1:yeah, definitely for sure, for sure a gift, then, um the same for you. Um, how do you support yourself on the days when you know it's hard to find that confidence?
Speaker 3:I love to feel the feelings. I love myself. I think most of the times I allow myself to go through it and one of the things I normally do is to get out of spaces that would trigger me. Any space I feel like the people I'm relating with, the conversations around, can trigger me or have triggered me. Then I withdraw and I have myself by myself first get through it. But more to that, I think I have a supportive family, supportive parents, and really they have been there for me every time I feel like I'm down. I ran to them, I told them I've been going through this, I'm feeling this way, and they have always been there to listen Because most of the times in that moment all I need is a listening ear and they really give me that and I'm glad and grateful.
Speaker 3:But not forgetting that with a community, I can't deny that much as I have all these people here, surely they can't clearly understand what it means Sometimes I have always run to the groups that we have, the social media groups of PIP, charity to the community, and I feel like there I can share and feel understood. Just sharing, having someone to tell, makes me feel relieved of the of the bad feeling that I could be having, or whatever I'm going through at that moment, sharing with the community, be it on whatsapp, be it on facebook, be it on instagram. Sometimes I run to Rebecca and, mostly on Instagram, I just tell her I'm dealing with this, this and this. Just one word from her puts me back to normal and I'm happy and glad to be having such a community and I'm grateful for the work that you do, samantha. I'm thankful and I'm grateful for the work that you do, samantha. I'm thankful and I'm grateful. I'm happy to be with you.
Speaker 1:Grateful for you all too, this wonderful community, and I think the big takeaway from both of you there is like support from others, whether that's in your family or from the community or people around you. It's like not to do this alone. I think that's so important and I think well, I know that was a big part of why this started. It was from my own feeling of loneliness as a parent with the child repulsion syndrome, to make sure that no one ever was alone again. So you know it's wonderful there's people joining us here, live today, but if anyone's listening who is journeying this alone, please don't do that anymore. You know, reach out to people around you, reach out to the community and know that there's people here that will support you with a word, with a little message online, you know, a phone call, anything. You're not alone. You are not alone.
Speaker 1:I just keep crying now. So I'm going to round things up soon so we can open it to the wider community, and I think it would be lovely to sort sort of finish with a question. Um to Karen. First, what's one thing you wish more people understood about living with Poland syndrome?
Speaker 2:I think I wish I understood how oh, not me I wish people understood, um, that Poland syndrome is a spectrum and I think I've always felt alone in the fact of I still haven't met someone that is chest and hand affected.
Speaker 2:It's still I've never, never met anyone, never spoken to anyone who is. And I wish people understood, like, how wide it can affect you and how it, how it isn't just the chest and like, whilst it is obviously extremely difficult to live being chest affected because that is the first thing people see and comment on I think I wish people understood that, like it's not just the chest, it isn't just the hand, like there are so many different ways it can affect you and none of which are more important or less important than each other, but that, just because you've made a decision to have surgery or not have surgery, I wish people kind of got that it was something that we all have to deal with in our own ways, but then also that we can still talk to each other and relate to each other even if we're not affected in the same way. I think that's really important.
Speaker 1:That is super, super important and I think you're right. It's so hard to explain to people like what is at each end of the spectrum and how everyone's affected differently. It would be really lovely to have an easier way to share that and spread that awareness.
Speaker 2:I had a message on TikTok. Someone messaged me after one of my videos I did and they said I have Poland syndrome and I'm just chest affected. I didn't have surgery. And then they said you can't have Poland syndrome because you've got a small hand. And it's like they didn't understand the um. And then they said you can't have ponen syndrome because you've got a small hand.
Speaker 2:It's like they didn't understand the full range of it and I don't think people understand like comments like that. It makes me think like, oh well, I do, but like I can't prove it to you, like there's no, no way we can prove it. There's no, there's not enough research where we can say like, look, it affects this, this and this and it. You can have it this way or that way. It's something that I think we all not need to understand more, but just need to think about more, that like, whilst we're doing all of these events, it would be great to have just a more understanding in the wider community, especially outside of PIP. I think, like people who aren't understanding in the wider community, especially outside of pip, I think like people who aren't involved in the charity or don't know who we are, I think it would just be great to have that research for them where they can show like it's. It's a spectrum and it's not a linear journey either yeah, absolutely, absolutely.
Speaker 1:I'm gonna add add that spectrum awareness to our list of research priorities because I think that is super important and it's kind of a new nuance to the awareness in a way, because the awareness has spread so much on social media in the last few years so there is like more people who who know about it and are getting diagnosed. So it's interesting that perhaps that spectrum of what a syndrome is and how people can affect it, as has maybe been missed out of the stuff that's out there at the moment, so it's a really good reminder of that. Thank you, karen, appreciate that. And then to gift then, what's one thing you wish more people understood about living with Poland syndrome.
Speaker 3:I wish most of the people understood the magnitude of the psychological impact of it being in a community where, in a thousand, you just find out as one who has it is not something it matters on a certain level level, at a certain level where I'm really confident in my body, but uh, like you asked, um, some days we really lose it some days. And uh, be it in the workspace, be it at home, be it in the communities, every community that at home, be it in the communities, every community that we stay in. I wish people could understand the magnitude of the psychological impact that it has on how people with peace live, and I think if they knew that, it would free us from the bullying, from the unkindness that comes with speech, people being unkind in speech, and understanding that the people with PS are already struggling with something, struggling with something, and so I think just saying anything that is unkind would lead them into more challenges than they have at the moment, and so I wish I could know the degree to which their behaviour impacts the life of people with peers, and maybe that would help people with peers to live in a better way. Maybe some way it would help them to feel supported in the communities they live than feeling like outcasts I can use that word. I just wish they could know the magnitude of the psychological impact than the physical, because most of the people, I think, they look at the physical, outward appearance and they lack knowledge of the psychological impact of it. And so if they knew that, perhaps it would help, and maybe more to that I wish. I feel like still we have a big number of medical workers who don't know. I wish they knew. In relating with the people with PS, they knew how. I wish they knew how to deal with them, acknowledging that their condition is physical but also psychological, not just looking at the outward of them, not just looking outward of them, but then supporting them physically to deal with their bodies, but also putting measures on how they can deal with the psychological part of it.
Speaker 3:This year in January, I happened to go to one of the medical institutions around my area and I tried to ask out for prostheses and to my surprise I couldn't find any. There were those for those who are impaired when it comes to the legs, those who don't have arms, but then I realized the breast was not there. So we made a connection to one of the cities in the country, but still we could not find any in the country, could not find any prosthesis, and that is a huge challenge. Next time me I might feel, but another person might feel like is not even catered for in a society where such is happening and that would put down someone psychologically also feel loss of, like our body is not even fit to be with the rest in the community. I would say a lot but allow me to stop.
Speaker 1:Oh, thank you for sharing. That's really important to know and to understand and hear from you. So thank you for that. I think we'll draw the podcast to a close in a moment, but just to give Karen and gift a moment. Is Karen first? Is there anything we've not shared that you want to share, that you'd like to say before we close?
Speaker 3:um.
Speaker 2:I think the main thing I want to say is just like the impact of PIP is. It is incredible and I think that we anyone you ask will agree that having this charity and having access to resources like the clinics you do in birmingham and the festivals we've done over the past and hopefully we will do in the future, it really does bring that sense of community to life. I think it's great to have it online, but knowing that there is an opportunity for us to meet up and to have that, um, have that connection with people actually face to face is really incredible, and I think that's something that you should, you know, be really proud of. And the fact that you've brought us all together and we're able to feel like we are a part of a community is wonderful, and it really does. It means a lot to me especially, but I think to everyone.
Speaker 2:But I think, like even looking back at the fashion show and how I felt afterwards and during it, just knowing that there were people out there fighting for Poland syndrome was the most impactful thing and knowing that we are making a dent in the in the journey of getting Poland syndrome recognized, and even if it is just recognized by the NHS in the next couple years, that would be great. But I mean is just recognised by the NHS in the next couple years. That would be great. But I mean it's, it's just been a wonderful experience working with you and being a part of the podcast. I mean this is my second time now and it's just it's great. I really I think it's making a big difference. Thank you, karen. Thank you, I make a huge difference.
Speaker 1:So thank you for all you do, um, and gift any final words of anything you want to share before we close. Thank you, you are making a huge difference, so thank you for all you do and Gift any final words of anything you want to share before we close?
Speaker 3:Yeah, yes, I think I would be unfair ending this without saying if it was not for PIP UK Charity, surely, if it was not for BIP UK charity, surely confidence confidence that he see me now would not be there? And, personally, I first came to know about BIP UK charity and the community in 2020. That was 2020, when COVID had hit, and after many years of trying to find out what this condition is, I landed on Rebecca's story and I was not on Instagram then. So when I looked at her story on, that was on the internet, on Google. As I was trying to find out, I was depressed. I was trying to find out what is this? And, landing on her story, there was a handle to Instagram, to her page. So when I talked to her for the first time then she told me about the community, the PIPUK charity community and the group of the ladies, and that was in 2020.
Speaker 3:It is then that I think my story really in some way changed and, as we end this podcast, surely allow me to say thank you for the work that you do, samantha.
Speaker 3:We are the neighbors of the community, but I think you take the lead With Peterson with the first time. I not say all of them, but I'm grateful for the work that you do, the effort that you put in to give us the support that we really need and, like we said, you realize, like for me and Karen, we have the confidence because we know there is someone who can understand. We are grateful for always organizing these meetings. Since 2020, I think I've had more than 10, more than 20 meetings with you online, but in Africa, and I'm happy for the connection that you create between us, although in different countries, to feel supported, feel connected, knowing that we have somewhere we belong and we are understood. I'm really grateful for that and I'm grateful for the moment we've shared in this time. I'm happy, I'm grateful I can't say it all, but I'm really happy for giving us this time. I want to be there for anything I can take part in.
Speaker 1:I want to be there. Thank you so much. Thank you, thank you, gift and Karen, for your openness, thank you, your strength, the beautiful experiences you've shared with us today, and thank you everyone for listening and being part of this shared with us today. And thank you everyone for listening and being part of this journey with us today. Um, if you want to learn more and connect with our community and get involved, just visit pip-ukorg or follow us on social media instagram and facebook primarily and you know, we have a global register where we're collecting data to help with our research in the future. Please go and check that out and sign up if you haven't already.
Speaker 1:We're also just started the first focus groups of some research into um surgery and the decisions that we're making around surgery to get some more knowledge and lived experience of that into the community. So please check out the links that are still on social to take part within those focus groups, because we need more people to get involved there. And if you would like to volunteer your time, this is hard, hard work and we need more people to get involved and even if that's just one hour a month, you know we need people to get involved and carry on this work, and I've been doing it for 16 years now and it takes a toll. So let's do it together. Take care everyone are seen, you are heard, you are not alone and you are deeply loved and valued by everyone in this community. So thank you, thank you, thank you.
