We hear time and again from people all over the world with Poland Syndrome believing they are the only ones wanting to make connections. Poland Syndrome is so rare that people have spent life times never meeting or hearing from someone who also has Poland Syndrome. With the internet and particularly social media that has begun to change. Despite this information is still spread out and our involvement with recent campaigns to raise awareness has proved not everyone know where to go or who to turn to.
At PIP-UK we’re trying to change that and make connections. Today we hear from Aussie Hands and organisation we connected with in Australia. Here’s what they wanted to share with you all:
Aussie Hands provides support, understanding and encouragement to parents, children and adults living with congenital and acquired hand differences in Australia. Aussie Hands seeks to ensure that people do not feel alone, that they are part of a wider supportive community.
Members can share stories, support as well as gain information and advice. Aussie Hands links people together through individual introductions, group events and a Facebook support group.
Aussie Hands also provides up to date information such as surgical options, introductions to relevant specialists, specialist equipment as well as techniques on how to handle issues such as bullying. Aussie Hands seeks to increase the awareness of hand differences in the wider community and advocate for future research into their prevalence and underlying causes.
Below is the experience of Mike, an Aussie Hands member:
“I am a 40 years old who grew up in regional Australia, with Poland Syndrome. Information on P.S. in the early 70’s was pretty scarce. Getting information on the condition, pre-internet was tough. There were no support groups and the information was limited. When it came to surgery, my mum was totally guided by the surgeon and could not “sense check” what she was being told. Was she doing the right thing? Would I grow up ok? How would the surgeries affect me?
The last of my surgeries (to split the webbing on my small right hand) where over 27 years ago. The Royal Children’s Hospital in Melbourne did a good job, but my mum did an amazing job. As scary as the decision she had to make for me all of those years ago where for her, I turned out alright. I’m successful in business, have played a lot of different sports and am happily married.
For a long time I thought I was the only kid in the world with P.S. Then came the internet and was able to find a few others, spread cross the world in different forums, but it wasn’t until I had children that it made me feel like I needed to really connect to other people with hand differences.
That’s where Aussie Hands comes in. I happened upon them some years ago, when I saw a story on them on the nightly news. I think it’s really important for children and their parents to know that they can grow up to be whatever they like (I’m some proof) and as equally important is having somewhere to connect and share information – things my mum couldn’t access in 1974. Aussie Hands is an amazing organisation, committed to supporting people with hand differences and their families.”
You can also find Aussie Hands on Facebook