In 2021, I turned 50-years-old and decided it was time something was done. So, three months ago, my family started a POLAND SYNDROMIGHTIES group on Facebook and LinkedIn for people like me, born with Poland Syndrome. With a comprehensive plan, people can achieve a mighty lifestyle like me, despite this rare and sometimes embarrassing birth difference. Moreover, this will naturally increase local diagnosis, national awareness, personalised empowerment and bring us closer to possible specific causes and global prevention.
Born in 1971, before the internet, support groups and any government initiatives in Australia for Poland Syndrome, my one small webbed hand and deformed rib cage with missing right pec muscles was brushed off by hospital doctors as just an unlucky ‘force majeure’. My dear mother was given no answers. Fast forward, I had two corrective surgeries on my small right hand to separate fingers before I turned 10 and then a major open chest surgery to reform my rib cage just before the highly peer pressured years of high school swimming lessons. Still, there was no name or cause for the birth difference.
Mum and I just accepted all that could be done were the three previous surgeries and that we should just make the best of it. So, I learnt to swim, ride bikes and motorbikes, drive cars, wrangle horses and trick ride, sail yachts, finish school and uni, type with both hands, woo people and wow crowds, always with the firmest handshake (pre-COVID-19 obviously). Still, I never once met one of the estimated one in 47,000 people also born with Poland Syndrome and still did not even know my birth difference had a name.
Then, one day in my 28th year, I was chucking a sickie from a boring city job and a relief GP from the outback took a keen interest in my right hand and ribs. She then purposefully wrote me a referral to a hospital genetic department and they in turn casually informed me that I had Poland Syndrome or Poland Anomaly as it was sometimes known. I raced home and called my mum who was overjoyed, in a way. Then, I opened a tab in Yahoo on my Toshiba Libretto (well, it WAS still 1999). There was nothing much about Poland Syndrome, although I did meet one lady in the USA with Poland Syndrome. That is where I basically left thinking about Poland Syndrome for another 20 years.
Why? Because I had already worked in my dream job as a private detective in a multinational company solving international cases, made a small fortune during the first dotcom bubble and even found time to volunteer in a Hong Kong orphanage nursing newborns on Monday nights when volunteers were notoriously scarce. I had seen the sights of the world, was dripping with girlfriends, getting published, speaking at conferences and was an annual guest lecturer of investigation techniques at a prestigious university.
Some people still shirk back in surprise when I offer my right hand to shake theirs, but not so much these days. Queensland’s climate made me a proud brown naturist and in 2008, I had no less than four ladies encouraging me to father children as they were assured Poland Syndrome was not hereditary. (I finally decided to marry and start a family with the only woman of the four who could tell me, without prompting, who said “Imagination is more important than knowledge”.)
Nevertheless, for the benefit of all the mothers, including mine, we need less imagination and more knowledge in finding the potential causes and available prevention of Poland Syndrome. In the meantime, Australian Government awareness programs, diagnosis training, subsidised medical procedures and therapies would ease the physical and emotional pain many with Poland Syndrome experience in puberty and later years.
Meanwhile, POLAND SYNDROMIGHTIES will be harnessing their investigative powers and networking skills around the world to bring information, support and community to any person with Poland Syndrome who may feel alone and/or need assistance.
30 April is Poland Syndrome Awareness Day — find out more about POLAND SYNDROMIGHTIES via our LinkedIn, Facebook and YouTube pages.
Please check the Rare Disease page(s) for related Support Organisation(s)