Joan’s Story

I am a 75-year-old woman born with Poland Syndrome. I was born in 1946 in Sydney. My mother was 38 and thought my birth defects were caused by a fall she had when she was expecting me. My right side was webbed; I had fused joints, crooked fingers, my right arm was smaller, I had little pecs and breast tissue and no sweat glands. It wasn’t until I was in my 30s that a name was put to my defects, Poland Syndrome.

Growing up, I had polio from about four years of age. I was diagnosed with polio just after the first of three operations to free up my fingers. As no one around me had polio, it was assumed I may have contracted it in hospital at the time. I spent six months in hospital for polio and another two years doing physiotherapy. Polio attacks the weaker parts of the body, and my right side was its target. So, the doctors assumed my smaller right arm and the weakness on that side of my body was due to polio. Mum was told, because of my deformity, that I should be put in a home for spastic (how I hate that word!) children. This did not go down well with Mum.

My mother then organised an exercise regime for me. Hence, I was taught to swim to strengthen my muscles. At first, when I started to swim, I would swim doggy paddle style with my right arm and overarm with my left. At the time, an assistant coach at the swim school told my mother he would have me swimming overarm on both sides by the end of the season, or there was no charge. The coach did just that and was my coach until he relocated and another coach took over. If it weren’t for these two coaches and my mother, I would not have had the confidence to handle some of the nasty remarks from people.

It is hard being different as a teenager. I often wondered, why me? However, I was lucky. I had Mum, Dad, my swim coaches, as well as my close cousins and friends to support and help me. They accepted me for me, not how I looked. I grew a thick skin, and swimming was my saviour as I wasn’t half bad. I competed at a state and national level. (There was no such thing as multi-class swimmers then.) I switched to synchronized swimming from 1964 to 1970 and managed to again compete at a state and national level, winning gold, silver and bronze at various national team events.

Dating was challenging. I didn’t have many boyfriends as it’s hard to explain you have no breast on one side at 16. That said, I did meet someone in my 20s, and we married in 1970. He was patient and didn’t seem to mind that I had no breast on one side. He was the one who suggested I see a reconstructive surgeon in Adelaide. This was when I first discovered there was a name for my condition.

It was a challenge to get my private health fund to pay for the surgery in 1976. I approached head office in Adelaide and, at first, they said no as it was considered cosmetic surgery. I had a letter from the surgeon saying it was for my mental wellbeing. Eventually, they ended up paying for 75% of the surgery. I’ve now had three implants in total. The first was silicone and ruptured, the second saline, which became hard, and the current third saline implant seems to be okay, although I am thinking of getting it removed as I am no longer fussed about appearances.

I have never allowed my small hands, arm and chest issues to get in the way of  achieving anything I wanted to. I was employed as a typist; my hobbies are knitting, crocheting, needlework, diamond painting and, of course, swimming. I now compete as a master’s swimmer in my age group of 75 to 79.

Throughout my lifetime, I have learned that if people say I can’t do something because of Poland Syndrome, I will prove them wrong.

30 April is Poland Syndrome Awareness Day. See RVA Partner, Poland Syndromighties, for more information.