Link October 2018 Volume 27 Issue 5 - Page 42

Continence and Personal Care After half a century living a ‘secret life’, Greg Ryan decided to go public with his story about a congenital A secret life condition called Imperforate Anus, or Anorectal Malformation, (IA/ARM), which occurs in one in 5000 births in western countries. S ince publishing his book ‘A Secret Life – Surviving a Rare Congenital Condition’ last year, Greg has connected with thousands of people around the world and this year he established the ONE in 5000 Foundation, a non-profit charity to provide assistance and support for others with the same condition. Most people have heard of Irritable Bowel Syndrome and Crohn’s Disease, but most people wouldn’t have heard of IA/ARM – until now. “The brutal reality is that 99.99 per cent of the population have never heard of it,” said Greg Ryan, 54, of Melbourne. “With this condition, you have your surgeries, but can never be totally repaired...and we have been pushed to the margins of society because of the lack of awareness”. Greg said he wrote his book because, for over 50 years, the only people who knew about his condition were his Mum, Dad and doctor. “I thought I was the only person in the world – not even my brother really knew,” he said. Greg’s book is a journey through the trials of secrecy, stigma, social shame, loneliness … but also of courage, enlightenment and joy. “In lay terms, I was born without 42 continence and personal care