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...Mental Health Resources for the Poland Syndrome Community
Links and information to organisations who can help with mental health for our Poland Syndrome Community. Information for children and adults.
Finding Community in Rare Disease
Angel shares her experience of not realising that she was looking for a community. Until she found the PIP-UK Poland Syndrome Support charity.