Amy was diagnosed with Cystic Fibrosis (CF) about six months after she was born.
I was diagnosed with Cystic Fibrosis (CF) about six months after I was born. The heel prick test that every baby in Australia has to undergo at birth, came back inconclusive. After two consecutive sweat tests the diagnosis was delivered to both my parents that I in fact had CF. At the time my mother was working as a nurse and knew the prognosis of this disease came with major life challenges.
Growing up with CF is really hard; you spend most of your life in hospital and over time the lines of reality blur and somehow your whole existence becomes hospital beds, needles and doctors’ visits. This is where you have to learn to make your own fun. I can remember having friends sleepover in hospital, and racing around the wards riding on my rickety IV pole.
I grew up in Canberra where access to treatment was limited. My family would often travel to Sydney to be able to see specialists. When I was six years old I started having excruciating stomach pains, which led to being diagnosed with liver disease. At 10 I was placed on the liver transplant list. I waited 22 months for a liver and then in 2001 the call came. After my transplant because of the antirejection medication I was then diagnosed with type 1 diabetes. CF patients often have a predisposition towards diabetes because of insufficient pancreatic function. For me it was a waiting game, the diabetes just came earlier then expected. At the age of 12 I took this really hard, as no teen ever wants to have to stop eating sugar and have to poke themselves with a needle four times a day.
28 years ago when the doctors told my family I had CF, my life expectancy was mid 20’s. As I age medicine has become a lot cooler. With gene therapy, and advancements in technology I am happy to say that I am defying the odds. That being said it’s still not easy, I have had difficulty accessing government assistance. I struggle to afford my 45 daily medications and I have lost jobs and relationships because I have had to spend extensive time in hospital. CF has its challenges, but with my support network I have, I have been able to achieve some of my dreams. I am lucky I get to be a part of RVA’s journey and see the amazing work they do.