Here at PIP-UK we are currently undertaking some work on gathering information about Poland Syndrome, so that we can provide you with a one stop shop for the best information that is out there .
In doing this research, I just wanted to share with you some of the frustrations I am having as a mother of a child with Poland Syndrome, which I am sure most parents and people with Poland Syndrome have shared when they are searching for information.
I am continually coming across the phrases ‘under reported and under diagnosed’ and ‘exact incidence difficult to determine’. These phrases are vexing me and it just makes me think ‘why’. People with Poland Syndrome and their families deserve to have answers, we deserve to know why this happens, how many people this happens to and then potentially what can be done about it.
Thankfully at PIP-UK we are trying to do something about this, we would like you to join us in collectively aiming to bring about change, so that we become the voice of Poland Syndrome.
There is a small step that we can all take to help make these changes, when you come into contact with a medical professional, tell them about Poland Syndrome, how you are effected and how rare it is. The more interest that is generated in the medical world, the more likely new research into Poland Syndrome becomes.
We hope to publish in the coming months details of what PIP-UK is doing to lead these changes and become that voice.
If you have any information, thoughts, observations or questions, please get in touch by leaving a comment below.