I was diagnosed when I was only one day old. I experienced a condition called Meconium Ileus, which is a symptom of Cystic Fibrosis (CF), and immediately under went surgery to remove some of my bowel. This has left me with a pretty gnarly scar on my stomach. I think I’m pretty lucky to be diagnosed so early, as I was able to begin treatment straight away. CF has simply been a part of my life since the beginning and in a way; this has made dealing with it a lot easier.
I take up to 40 tablets daily, which includes several tablets every time I eat, antibiotics, vitamins and salt tablets as well as daily inhalers. I also spend up to two hours a day on lung treatment, which involves a nebulised solution and a lot of coughing. This helps to clear my airways of mucus, allowing me to breathe easier. When I’m sick, the time spent on nebulising can double to assist with recovery. On top of this, I’m encouraged to exercise everyday, to strengthen my lungs and all this is while I continue to work a full time job!
In order to improve the quality of life for those living with CF, ideally I want a cure; a world where people are unaffected by CF. However, a more realistic improvement would be the continued funds and Government support of the imperative research that is currently underway. The faulty gene causing CF has been identified and scientists are working hard on medications that directly treat the faulty gene. There are amazing trials that are happening with hugely successful results. As the health of those with CF improves, it is giving a new burst of hope for the future. Without the continued support these successful results won’t continue. In order for financial and Government support to continue people need to get up and talk about CF and other rare diseases and educate one another and the wider community. Help restore hope in the lives of those living with any rare disease, and give them a brighter future.