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.
Poland Syndrome | Missing Muscle
The Mystery of the Missing Muscle I am a 67 year old man with Poland Syndrome – though up until a few years ago I had no idea that is what it is called. It was only after hearing the Sussex cricketer Lewis Hatchett speak about the condition on Test Match Special that...Big Sister- To a Very Special Little Boy.
Nancy became a big sister to a new born baby brother who was born with Poland Syndrome and shares her experience of watching her baby brother grow up
Poland Syndrome | Meet Tasha and Harry
Mum Tasha, tells about her experience on getting a diagnosis for Poland Sydnrome for her son and how PIP-UK helped on that journey
Poland Syndrome | Father’s Story
Poland Syndrome Father’s are not a group of individuals we hear from. We were delighted when one Poland Syndrome Father agreed to share his experience
Poland Syndrome | Starting School
Is your child starting school are you worried about what to say to teachers about Poland Syndrome? Mum, Sam shares her experience.
Poland Syndrome | Using Games Consoles
Sharing experience about my son and using games consoles like playstation and Wii with Poland Syndrome.
Poland Syndrome | Swimming Lessons
Poland Syndrome can be a difficult diagnosis for parents but there will come a time when you don’t feel the need to explain to everyone.
Poland Syndrome | Sharing Melissa’s Story
We recently connected with Melissa who has started a Poland Syndrome blog and asked us to share her story with us.
Poland Syndrome | Bullying, School and Inclusion
Children start noticing differences at a young age. I share my own experience of my son’s first encounter with bullying at school, how it made me feel and what we did.