Poland Syndrome Support

A Reminder Why PIP-UK exists

Welcome back, its 2014 we hope you had a wonderful Christmas with friends and family. PIP-UK is all about spreading the news and educating our medical professionals about poland syndrome. We were reminded about this when we came across a blog post from a while ago. Below is an excerpt from the blog post:

One day when Thomas was a few months old I noticed that one side of his chest did not appear the same as the other there was a lump like a bone, I pointed this out to my health visitor and my GP and they said not to worry as he was growing this was becoming more noticeable so I asked to be referred to Alder Hey children’s hospital we were seen by a doctor who sent us for an x-ray and he said some of Thomas’s ribs were fused together and that was that some people are like that and it was nothing else, so off we went.

As Thomas grew his chest became more noticeable and 1 day whilst reading the paper I came across a story of a man who had just been diagnosed with Poland syndrome, I read more and was sure this was what my son had, I took him to the GP whom told me that Thomas did Not have Poland syndrome as his hands were fine, but the older he got the more I knew that the muscle in his chest was missing and I was sure I was right ……But how do you go to your GP and say your wrong I’m right?

We’re glad to say Mum persevered and found a support group due to her determination! Thomas was diagnosed and received treatment at a hospital in Derby well-known to PIP-UK. Poland syndrome is rare, it’s not known about and there is still lots for us to do.

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