What about PS? With Caron and Gift
Uniting Voices for Poland Syndrome Awareness What about PS? What happens when you meet someone with your rare condition for the first time at age 24? Karen and Gift share their emotional stories of finding belonging through @PIPUK. Their message: “You are seen,...A synopsis of our medical symposium for medical professionals
Summary of PIP-UK Medical Symposium Wednesday 7th June 2023 Plan Early Treatment for Children with Poland Syndrome Alan Macnichol This first in a planned series of medical symposia organised by PIP-UK was held on Zoom on 7th June 2023. A panel of clinicians from the...Our 1st Medical Symposium
Plain English Summary of PIP-UK Medical Symposium Wednesday 7th June 2023 Plan Early Treatment for Children with Poland Syndrome Alan Macnichol This first in a planned series of medical symposia organised by PIP-UK was held on Zoom on 7th June 2023. A panel of...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...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.