9 episodes

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 Team PIP-UK

    • Health & Fitness

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.

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

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

    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.



    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

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

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

    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/

    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

    • 39 min
    Ep 6 Meet Gunnar Anderson

    Ep 6 Meet Gunnar Anderson

    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.


    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

    • 49 min
    Ep 5 A Parents Perspective

    Ep 5 A Parents Perspective

    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!
    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

    • 41 min
    Ep 4 Meet Brian Ferguson

    Ep 4 Meet Brian Ferguson

    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.




    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

    • 44 min
    Ep 3 A female perspective on surgery and none surgery options

    Ep 3 A female perspective on surgery and none surgery options

    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.
    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

    • 46 min

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