Cystic Fibrosis is the most common life threatening hereditary illness amongst Australians.
In Australia, a baby is born every 4 days with Cystic Fibrosis. With the average life expectancy now at 37 years old, this is a scary number for me.
I am 28 years old and have Cystic Fibrosis. I have lost more friends than I can count all under the age of 21 due to this horrific disease. I attended my first funeral at just 6 years old, unfortunately a common “event” that I found myself going to almost yearly.
CF is an invisible disability; there is currently no cure. I am grateful that I do not look sick, but this can make it hard when educating others on just how serious this disease is. I am a proud mother of two beautiful children, something I didn’t think would be possible, I am more passionate than ever about raising awareness and funds for Cystic Fibrosis, I want to see my children grow up.
CF primarily affects the lungs and digestive system, CF suffers have a defective gene and this is what causes the body to produce thick and sticky mucus which makes it harder for CF sufferers to breath as the mucus blocks the lungs – intensive daily treatment is required just to maintain good airways, when a cold occurs in someone with CF this can be life threating.
Because the mucus damages the pancreas system, it stops the natural enzyme’s system working, it is common for CF sufferers to require pancreatic enzymes to assist with the break down of foods to absorb them.
I have recently had to undergo a process that has made me have to address my condition in depth. This was a scary reality check for me. I often like to go about life and be as positive as possible. This reality check reminded me that taking 40 pancreatic enzymes per day is a must, without them I end up with excruciating stomach pains which leads to hours on the toilet, it leads to weight loss – I have to follow a high calorie diet plan as I struggle to gain weight. The chronic cough I have – I often find myself having people comment saying things like I don’t want to catch that or you should stop smoking, the lethargy I feel and having no energy because I am tired, tired of being up all night coughing and then the chest pain and muscle pain from coughing leaves me exhausted.
Then the anxiety and depression – only natural because of the battles this illness throws my way. From deaths, to frequent hospital admissions for intravenous antibiotics, to having my life interrupted by CF, it is not fair.
Rather than feel sorry for myself, I am amongst so many other Australian’s who have Cystic Fibrosis. A cure must be found. I have made it my mission to make a mark in the world. As the Cystic Fibrosis Australia ambassador I have been fortunate to attend many events as a motivational speaker, telling my story to inspire, educate and give hope to others.
Unfortunately due to cross infections amongst CF sufferers, we are not allowed to be in contact without masks on our faces so we don’t pass bugs, so social media is our platform to keep in touch and advocate for CF.
I am excited to have just been announced The Cure4CF Foundations Cystic Fibrosis Ambassador. The Cure4CF Foundation supports the work of the Adelaide CF Gene Therapy Research Group as they work towards finding a cure for CF. I remember as a child my Mum telling me Associate Professor David Parsons would be the man to cure CF one day. With his dedication, expertise and passion he is leading the research team. I am excited to be on board with the foundation in support of David and his team.
This leads me to begin my first major fundraising campaign for The Cure 4 CF Foundation. I like to think outside the box and have something to reach for.
My campaign faceyourfears4cure4cf is going to run over August, September and October. My goal – is to raise a minimum of $5000. If I can achieve this target, my Husband Nick and I are facing our ultimate fear, Shark Cave Diving.
So I want to encourage you to firstly donate to my cause, help me hit my target and secondly I ask you, what is your fear? Upload a picture to social media using the tag #faceyourfears4cure4cf with your fear, whether it be heights, spiders or something small – I want to know.
Having CF should not be scary, everyday it surfaces new challenges and fears arise, I want to do this campaign to show that we can face our fears, face CF and one day we will beat it.
Please also spread the word by sharing my page with your friends and family. Thank you in advance for your generosity, it means a lot!
Proudly sponsored by REX Airlines, Calypso Shark Cave Diving and Port Lincoln Hotel
Orkambi is the latest drug for CF suffers, with proof of improvement to CF health. From weight gain to lung function increasing, to general healthy wellbeing, Orkambi is the closest thing to a cure we have had in many years. Unfortunately, here in Australia it is not accessible for us with CF as it has mot been recommend for reimbursement but the Pharmaceutical Benefits Advisory Committee (PBAC) This is a fight we are fighting between the Government and Vertex, the drug development company over price. What frustrates me is how can you put a price on life? It costs around $300K for a years supply. This drug has proven to better the lives of people with CF yet it is not available for us her in Australia. So the battle will continue until it becomes accessible for us.