Experience our heartfelt podcast episode, recorded live with community participation, highlighting stories and insights on Poland Syndrome. Tune in to hear from those directly impacted and learn how you can contribute to awareness efforts.

Poland Syndrome Awareness Day brings with it powerful reflections on living with a rare congenital condition that affects chest wall development and, in some cases, hand development. In a special episode of “What About PS” podcast, we hear from two remarkable women – Gift from Uganda and Karen from Devon – who share their journeys of discovery, challenge, and ultimately empowerment in living with Poland Syndrome.

The podcast reveals the deeply personal moment when each woman first discovered their condition. Karen has known about her Poland Syndrome since birth, with both hand and chest involvement, while Gift discovered her difference during puberty in 2012. Their stories highlight the varied spectrum of Poland Syndrome presentation and the challenges of growing up feeling different in societies that often fail to understand or acknowledge such differences.

What emerges clearly from both women’s accounts is the profound psychological impact of living with a visible difference. Gift speaks eloquently about the emotional toll of navigating school life, particularly communal changing rooms where her difference was exposed. The constant anxiety of facing potential questions or comments created ongoing stress that affected her daily life. Karen shares how her confidence was particularly challenged during puberty when breast development made her difference more pronounced, leading to years of hiding and concealing her body.

Perhaps the most transformative experience for both women was participating in an inclusive fashion show organized by Birmingham Children’s Hospital in collaboration with PIP UK (the Poland Syndrome charity) and Malawian designer Lily Alfonso. This landmark event marked the first time either woman had met others with Poland Syndrome – a profoundly moving experience that Karen described as “the most impactful and courageous thing I’ve ever done.” For Gift, who traveled to the UK for the first time for the event, it represented a space where she finally felt understood after years of isolation with her condition.

The conversation turns to the fashion and beauty industries’ readiness to embrace bodily differences. Both women express skepticism about genuine inclusivity, with Karen noting that while designers might claim readiness, actual adaptive fashion remains limited and often unaffordable. Gift highlights how societal focus on physical appearance creates barriers, with many clothing retailers unwilling to accommodate bodily differences. This reality forces many with physical differences to adapt their clothing choices rather than finding fashion that adapts to them.

When asked what message they would share with their younger selves, both women offer wisdom born from experience. Karen emphasizes that living with Poland Syndrome “isn’t as bad as you think it is” and encourages younger people to live boldly rather than hiding. Gift’s powerful message that “different is okay and beautiful” speaks to the journey toward self-acceptance that many with visible differences undertake. Both acknowledge this is easier said than lived but emphasize the importance of focusing on inner beauty rather than physical appearance.

The podcast concludes with powerful reflections on what they wish more people understood about Poland Syndrome. Karen highlights the importance of recognizing Poland Syndrome as a spectrum condition that affects people differently, while Gift emphasizes the need for greater awareness of the psychological impact, which often exceeds the physical challenges. Both women express gratitude for finding community through PIP UK, emphasizing how connection with others who share their experience has been transformative in their journeys toward self-acceptance and confidence.