Cover image of show What about PS? A Poland Syndrome Podcast

What about PS? A Poland Syndrome Podcast

Podcast by Team PIP-UK

English

Health & personal development

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About 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.

All episodes

11 episodes

episode Embracing Difference: Stories of Courage and Community artwork

Embracing Difference: Stories of Courage and Community

Send a text [https://www.buzzsprout.com/twilio/text_messages/2143910/open_sms] 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/ [https://pip-uk.org/] Follow us on social media: https://www.instagram.com/polandsyndromepipuk/ [https://www.instagram.com/polandsyndromepipuk/] https://www.facebook.com/pip.uk.org [https://www.facebook.com/pip.uk.org] https://www.linkedin.com/company/pip-uk/ [https://www.linkedin.com/company/pip-uk/] https://twitter.com/Polandsyndromep [https://twitter.com/Polandsyndromep] https://www.youtube.com/user/pipthecharity [https://www.youtube.com/user/pipthecharity] https://www.tiktok.com/@polandsyndromepipuk [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

29 Apr 2025 - 1 h 0 min
episode S2E3 Unveiling Confidence: Caron Mills' Runway of Resilience with Poland Syndrome artwork

S2E3 Unveiling Confidence: Caron Mills' Runway of Resilience with Poland Syndrome

Send a text [https://www.buzzsprout.com/twilio/text_messages/2143910/open_sms] In this episode, we step into the spotlight with Caron Mills, a beacon of courage and confidence in her journey with Poland Syndrome. Join us as Caron shares her story of self-discovery, community, and the runway of resilience she's walked, just weeks before strutting her stuff in a groundbreaking fashion show dedicated to celebrating diversity. **Episode Highlights:** 1. **Caron's Journey with Poland Syndrome:**    - Caron unfolds her tale of triumph over adversity, recounting her path through surgeries and self-acceptance with grace and determination. 2. **Embracing Self-Love:**    - Dive into Caron's reflections on embracing her uniqueness, finding beauty in her differences, and cultivating unshakeable confidence. 3. **Shining as a Role Model:**    - Discover how Caron has become a guiding light for others, illuminating the path to self-empowerment and acceptance. 4. **Volunteering for Change:**    - Explore Caron's journey as a volunteer, igniting change and hope within the Poland Syndrome community, one act of kindness at a time. 5. **Fashioning Awareness:**    - Join Caron on the runway of awareness as she shares her excitement and preparations for a groundbreaking fashion show dedicated to Poland Syndrome inclusivity. 6. **Kindness as Key:**    - Uncover the transformative power of kindness and community in Caron's journey, igniting sparks of compassion and connection. Caron's journey is a testament to the resilience of the human spirit and the transformative power of self-love and community support. Her story serves as a beacon of hope and inspiration to all who dare to walk their own runway of resilience. **Outro:** Thank you for tuning in to What about PS? A Poland Syndrome Podcast. If you found this episode as inspiring as we did, don't forget to subscribe and share it with your friends. Stay tuned for more captivating stories. After all, every journey is a runway waiting to be walked with courage and grace. 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/ [https://pip-uk.org/] Follow us on social media: https://www.instagram.com/polandsyndromepipuk/ [https://www.instagram.com/polandsyndromepipuk/] https://www.facebook.com/pip.uk.org [https://www.facebook.com/pip.uk.org] https://www.linkedin.com/company/pip-uk/ [https://www.linkedin.com/company/pip-uk/] https://twitter.com/Polandsyndromep [https://twitter.com/Polandsyndromep] https://www.youtube.com/user/pipthecharity [https://www.youtube.com/user/pipthecharity] https://www.tiktok.com/@polandsyndromepipuk [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

30 Apr 2024 - 47 min
episode S2E2 From Unaware to Unifying: Paul's Journey with Poland Syndrome Parenthood and PS Fest artwork

S2E2 From Unaware to Unifying: Paul's Journey with Poland Syndrome Parenthood and PS Fest

Send a text [https://www.buzzsprout.com/twilio/text_messages/2143910/open_sms] In this episode, we delve into Paul Preston's extraordinary journey, from a world of unfamiliarity to becoming a driving force in the Poland Syndrome community. Pauls world was forever changed when his son was born with Poland Syndrome. Join us as we explore his path of discovery, advocacy, and unity, ignited by the arrival of his son William in 2022. **Episode Highlights:** 1. **A Father's Awakening:**    - Witness Paul's awakening to Poland Syndrome when his son enters the world, propelling him into a realm of newfound understanding and purpose. 2. **Guided by Support:**    - Discover how Paul and his wife Rachel found solace and guidance through PIP-UK, a beacon of support for families navigating the complexities of Poland Syndrome. 3. **Embracing the Community:**    - Follow Paul and Rachel's journey of embracing the Poland Syndrome community, transforming adversity into a mission of equality, togetherness, and acceptance. 4. **Advocacy in Action:**    - Explore Paul's tireless efforts in raising awareness, breaking stigmas, and fostering inclusivity within the Poland Syndrome community and beyond. 5. **Uniting Hearts and Minds:**    - Witness the power of unity as Paul and Rachel's advocacy work brings the Poland Syndrome community together, creating a tapestry of support and solidarity. 6. **PS Fest: Join Us!**    - Paul shares exciting details about PS Fest, happening on April 27-28th in Birmingham. From a fashion show to axe throwing, bouncy castles, talent shows, and evening entertainment featuring DJs and comedians, there's something for everyone.    - On the second day Dive into the festivities with morning activities at an urban farm and a family cinema showing, uniting families and individuals in celebration and camaraderie. Sign up to attend here [https://forms.gle/DdT4bGRkPMNcCvhb8]. Paul's journey is a testament to the transformative power of love, community, and unwavering dedication. His story serves as a beacon of hope and inspiration, inviting all to join in the celebration of unity at PS Fest. Thank you for joining us on What about PS?  [Podcast Name]. If Paul's journey resonated with you, be sure to subscribe and share this episode. We invite you to join us at PS Fest on April 27-28th in Birmingham, where we'll celebrate diversity, resilience, and the spirit of togetherness. Stay tuned for more empowering stories and opportunities to make a difference. 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/ [https://pip-uk.org/] Follow us on social media: https://www.instagram.com/polandsyndromepipuk/ [https://www.instagram.com/polandsyndromepipuk/] https://www.facebook.com/pip.uk.org [https://www.facebook.com/pip.uk.org] https://www.linkedin.com/company/pip-uk/ [https://www.linkedin.com/company/pip-uk/] https://twitter.com/Polandsyndromep [https://twitter.com/Polandsyndromep] https://www.youtube.com/user/pipthecharity [https://www.youtube.com/user/pipthecharity] https://www.tiktok.com/@polandsyndromepipuk [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

4 Apr 2024 - 39 min
episode Season 2 - Ep 1 Scotland's Poland Syndrome Advocate: Jen's Inspiring Journey artwork

Season 2 - Ep 1 Scotland's Poland Syndrome Advocate: Jen's Inspiring Journey

Send a text [https://www.buzzsprout.com/twilio/text_messages/2143910/open_sms] Welcome to What about PS? Podcast the show where we delve into remarkable stories and journeys that inspire us all. I'm your host, Giselle, and today we have a very special episode in honor of Rare Disease Day. Join us as we shine a light on Jen's extraordinary journey to diagnosis in Scotland for her son and her unwavering commitment to educating health care professionals in Scotland about Poland Syndrome. Jen's story is not just about resilience; it's about turning challenges into opportunities for advocacy and education about Poland Syndrome in Scotland. In this episode, we'll hear from Jen herself as she shares her experiences, challenges, and triumphs. We'll also explore the importance of raising awareness about rare diseases and the impact it has on individuals and communities. So, whether you're familiar with our podcast or just tuning in for the first time, get ready for a deeply moving and insightful conversation that will leave you feeling inspired. Sit back, relax, and join us as we celebrate Rare Disease Day with Jen's incredible story. You won't want to miss this empowering episode! #RareDiseaseDay #PodcastEpisode 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/ [https://pip-uk.org/] Follow us on social media: https://www.instagram.com/polandsyndromepipuk/ [https://www.instagram.com/polandsyndromepipuk/] https://www.facebook.com/pip.uk.org [https://www.facebook.com/pip.uk.org] https://www.linkedin.com/company/pip-uk/ [https://www.linkedin.com/company/pip-uk/] https://twitter.com/Polandsyndromep [https://twitter.com/Polandsyndromep] https://www.youtube.com/user/pipthecharity [https://www.youtube.com/user/pipthecharity] https://www.tiktok.com/@polandsyndromepipuk [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

21 Feb 2024 - 39 min
episode Ep 6 Meet Gunnar Anderson artwork

Ep 6 Meet Gunnar Anderson

Send a text [https://www.buzzsprout.com/twilio/text_messages/2143910/open_sms] Welcome to What about PS? Poland Syndrome Podcast, the show where we share inclusive and varied experiences of people living with Poland Syndrome. I'm your host, Giselle Barbosa and today we're diving into getting to know Gunnar Anderson. Whether you're a longtime listener or a newbie, we're so glad you're here. On today's episode, we're joined by Gunnar Anderson, who in his own words "Growing up, I was a skinny kid and I was more interested in acting than sports" and in 2014 Gunnar became a certified personal trainer and launched his online training programme through Instagram. Together, we'll explore overcoming insecurities, growing up with Poland Syndrome, meeting others with Poland Syndrome, surgery considerations, Hollywood and finding answers about Poland Syndrome. You will not want to miss this episode! So sit back, relax, and enjoy the show! If you want to follow Gunnar, you can connect on Instagram [https://www.instagram.com/itsgunnaranderson/]. 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/ [https://pip-uk.org/] Follow us on social media: https://www.instagram.com/polandsyndromepipuk/ [https://www.instagram.com/polandsyndromepipuk/] https://www.facebook.com/pip.uk.org [https://www.facebook.com/pip.uk.org] https://www.linkedin.com/company/pip-uk/ [https://www.linkedin.com/company/pip-uk/] https://twitter.com/Polandsyndromep [https://twitter.com/Polandsyndromep] https://www.youtube.com/user/pipthecharity [https://www.youtube.com/user/pipthecharity] https://www.tiktok.com/@polandsyndromepipuk [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

22 Aug 2023 - 49 min
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