Poland Syndrome is a rare birth difference. This syndrome occurs during foetal development and the baby is born with physical differences. The main physical sign of Poland Syndrome is an under-developed or missing chest muscle. This is not something that a parent or indeed doctor may be able to see without some further investigations. Sometimes this is not seen at birth. A child may be several years old before the missing muscle(s) become apparent parents often describe a “sunken-chest”. However, another notable sign you might see are some of the child’s fingers are webbed on one hand or there are digits missing.

I have used my experience and love for my son to create PIP-UK to raise awareness of Poland Syndrome, create a community of people living with the syndrome, both direct and family members, and offer support by being a first point of contact for anyone who needs it.

Over the last 12 months PIP-UK has received funding for the first time from the national lottery.  We are working on bringing the community together in a registry for the first time so we can build the foundations for future medical research and pave the way for improved diagnosis and therapeutic interventions.  We are also building relationships with medical professionals and the wider rare disease community to help in our mission to raise more awareness.

We have big plans and one of the most exciting things we are looking forward to is holding our first family weekend this summer (covid dependent).

Please visit our website to find out more about Poland Syndrome and how you can help to raise awareness.