What about PS? A Poland Syndrome Podcast

Embracing Difference: Stories of Courage and Community

Tue, 29 Apr 2025 12:00:00 +0100

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

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

Tue, 30 Apr 2024 04:00:00 +0100

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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.

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

Thu, 04 Apr 2024 12:00:00 +0100

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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.

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.

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

Wed, 21 Feb 2024 09:00:00 +0000

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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

Ep 6 Meet Gunnar Anderson

Tue, 22 Aug 2023 07:00:00 +0100

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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.

Ep 5 A Parents Perspective

Tue, 18 Jul 2023 06:00:00 +0100

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Welcome to What about PS? A 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 the Parents perspective. Whether you're a longtime listener or a newbie, we're so glad you're here.

On today's episode, we're joined by Michelle Ridley, mum to Everleigh and Ailsa who will be talking us through their families experience with diagnosis of Poland Syndrome, reaching out for support and talking to the kids, friends and family about Poland Syndrome. And as always, we'll wrap up with some ways that you can get support and connect with other parents in the PIP-UK Poland Syndrome Community.

So sit back, relax, and enjoy the show!

Ep 4 Meet Brian Ferguson

Tue, 20 Jun 2023 06:00:00 +0100

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Welcome to What about PS? A 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 Brian Ferguson and his journey with Poland Syndrome, music and life. Whether you're a longtime listener or a newbie, we're so glad you're here.

On today's episode, we're joined by our volunteer Brian Ferguson. , who talks his earliest memories of surgery in childhood, learning to play the guitar and the joy of discovering ways to use both hands at the same time. Together, we'll explore how autonomy is important to Brian, about disability, making adaptation's and self-acceptance. And as always, we'll wrap up with some of our personal experiences.

Brian is 40 and a life long New Yorker from long Island. He's been eager to share his knowledge and experience living with rare disabilities, including Poland's Syndrome. Despite his limb differences, he learned to play guitar in part to play Christmas carols for the elderly in nursing homes for an annual event. Brian is a supporter of limb difference representation in media and had himself drawn into a Darkhorse comic book to help with that goal. You may contact him at brianspoon83 on Instagram, where he plans to post clips of the exercises he is able to do with his limb difference.

Ep 3 A female perspective on surgery and none surgery options

Sun, 30 Apr 2023 06:00:00 +0100

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Welcome to What about PS? A 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 the topic of surgery and deciding wether it’s the right path for your PS journey. Whether you're a longtime listener or a newbie, we're so glad you're here.

On today's episode, we're joined by our Trustee Kira and Kate Taylor from Evenly, who will be talking about their experiences with breast asymmetry, as well as stories from other ladies with Poland Syndrome. Together, we'll explore some of the options out there for ladies with breast asymmetry, as well as the impact Evenly have had on our community. And as always, we'll wrap up with some of our personal experiences.

Ep 2 A male perspective on sport, mindset and surgery

Sun, 30 Apr 2023 06:00:00 +0100

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Welcome to What about PS? A 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 the male experience of Poland Syndrome from 3 guys points of view. We're so glad you're here.

On today's episode, we're joined by Kim Daybell, Lewis Hatchett and Clay Mason-Stephens, who dive into their experience of living with Poland Syndrome.

They will be sharing their thoughts on their experiences with Poland Syndrome, how sport benefited their physical and mental strength, and surgery operations for men. Together, we'll explore how to accept your Poland Syndrome, how to cultivate a positive mindset, the benefits of sports and exercise, and what surgery options are available for men. And as always, we'll wrap up with some advice from our guests for people who are struggling with their Poland Syndrome.

Ep 1 - Introduction to - What about PS? A Poland Syndrome Podcast

Sun, 30 Apr 2023 06:00:00 +0100

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Welcome to What about PS? A 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 [insert topic of the episode]. Together, we'll explore everything Poland Syndrome related, we're so glad you're here.

Together, we'll explore everything Poland Syndrome related.

On today's episode, we're joined by Sam Fillingham, CEO and founder of PIP-UK, mum to George with Poland Syndrome. Together, we'll explore what is Poland Syndrome? And why is it important to talk about Poland Syndrome? As well as what the Poland Syndrome community means to us and what you can look forward to hearing about as the episodes inclusive of the varied experiences of Poland syndrome.

So whether your hand affected, whether your chest affected, whether you're affected in both and you've got a wider range of symptoms, there should be something within the experiences and the voices that you will hear within this podcast that will help you.

So sit back, relax, and enjoy the show!

Trailer - What about PS? A Poland Syndrome Podcast

Mon, 24 Apr 2023 12:00:00 +0100

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Welcome to What about PS? A Poland Syndrome Podcast.

The show where we share inclusive and varied experiences of people living with Poland Syndrome. I'm your host, Giselle Barbosa.

Together, we'll explore everything Poland Syndrome related.

Through this podcast we want to create a space for people to come and not feel judged, to just share their experiences, get some knowledge where they can. We want to try and make their lives better as well as we can and continue to grow the PIP-UK community.

So sit back, relax, and enjoy the show!