Poland Syndrome Awareness and Me
As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together. The challenges we faced in his first few weeks and years and the way we overcame them inspired me to found the charity PIP-UK. Our mission is to make sure no-one was ever alone on their Poland Syndrome journey again.
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.
We would like to thank Sam Pip for sharing his inspirational story of founding his charity with us. If you would like to know about Poland Syndrome and Me be sure to follow the on Twitter @PIPMANCHESTER, Facebook @pip.uk.org, Instagram @polandsyndromepipuk and their website www.pip-uk.org
If you would also like to get involve and share your experience with Ataxia or other rare condition, please get into contact with us through our social media channels below.