Poland Syndrome Support

Survey results – Age of Diagnosis

The age at which people get diagnosed with Poland Syndrome has been something of a topical debate at PIP-UK. We regularly hear from people of all ages just finding out. We have of course parents who contact us to say their newborn has been diagnosed. But we also have parents of kids who are 5-7 years old, teenagers who have just learned they have Poland Syndrome. People in their 20s, 30’s and most recently a lady in her 60’s. It seemed to us there is quite a difference.

With the age of technology we wondered if this had changed? After all it had been some years since our founders little boy was born with Poland Syndrome maybe there was more awareness now. With that in mind we conducted a short survey with members across Facebook and asked them what the age was that they or family member were diagnosed with Poland Syndrome.

The results are in the slideshow above. The unexpected positive was the number of people keen to share their diagnosis story. In face we had so many comments we couldn’t fit them all in. But we included as many as we could.

Our conclusion was this. Today’s modern world of social media helps people find each other and get support / information about Poland Syndrome. But diagnosis is still a problem. The cause of Poland Syndrome is still unknown. Doctors have thousand upon thousands of syndromes and diseases to remember so it’s hardly surprising they don’t always get it right.

Poland syndrome is rare. The visual difference of a newborns hand does not always reconcile to being Poland Syndrome there are other syndromes that are similar physicality. The chest area on the same side where muscles may be undeveloped or simply not formed doesn’t become visually apparent until babies grow and sometimes it’s never noticed.

In which case we think the best way forward is to educate the general public about Poland Syndrome. You can help do this by sharing our posts, website, tweets etc and lets get the message out there.

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