Volunteer Opportunities Summer 22

We are on our way to creating a thriving Poland Syndrome Community that enables the people affected by Poland Syndrome to live their best lives. PIP-UK brings together the Poland Syndrome Community by creating a culture that celebrates, connects and informs. But we...

Living Well with Poland Syndrome Blog

How positive journaling can improve your outlook when living with Poland Syndrome. Tiegan MacAulay Poland syndrome is a condition whereby a person’s muscles on one side of the body are absent or undeveloped, causing anomalies in the chest, as well as the...

Poland Syndrome Awareness Fun Day 2022

Poland Syndrome Awareness Day Fun Day Meet Up PIP-UK celebrates Poland Syndrome Awareness Day with Fun Day Meet-up!#PolandSyndromeAwarenessDay Poland syndrome is a condition in which a person’s muscles on one side of the body are absent or undeveloped, causing...

Poland Syndrome Essay by Charlotte Mercer (medical student)

Rare Disease Patient Groups: Taking Research Into Their Own Hands Rare Diseases and Research Participation Introduction Living with a rare disease can be an incredibly isolating experience, with some patients suffering in silence for many years. This problem is...

Living With Poland Syndrome – Stuart (interview)

The PIP-UK team interview Stuart about his Poland Syndrome journey and how he feels about the Poland Syndrome Community Register. Video Transcript:  Sam  0:03   Okay, welcome, everyone. We’re back in our series of talking about our global Poland Syndrome...

Poland Syndrome – Female Experience

Poland Syndrome – Female Experience.  Today we share a story sent to us by Elizabeth Page:  When I was born 31 years ago, my ribs were concaved. My mom said it was kind of as if I was folded in half. They rushed me off and after a while let my dad know what was...

Poland Syndrome – Female Struggles

I was diagnosed with Poland Syndrome at age 8. With precocious puberty, I was already on edge about how my body was developing, so when I noticed my breasts beginning to differ by multiple cup sizes with no end in sight, it really affected my ability to view myself...

Poland Syndrome 1940’s baby

Throughout life I have tried not to let the disability hold me back and have had a career in scientific research. I have driven a manual car for the last 50 years and I have always played sport. I have played football, rugby, golf and squash at a not very high level at various times in my life. I still fly fish and go for a jog several times a week.

Poland Syndrome Ambassadors

We are very blessed at PIP-UK to have 4 amazing Poland Syndrome Ambassadors  Lewis Hatchett – An Athlete Mindset Coach  Becca Butcher – Digital Creator  Kim Daybell – Paralympian and Junior Doctor  Richard Stott – Actor and Comedian  All 4 live...

Poland Syndrome – Getting Older

This information was kindly provided by Shirley in our Poland Syndrome Facebook Group. Shirley gave us permission to publish her account to our blog post. Our hope is this will be of use to others who are experiencing life as an older person living with Poland...