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what I wish you knew about my life with cystic fibrosis

what I wish you knew about my life with cystic fibrosis

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A lot of people look at me and don't think there's anything wrong. My disease is invisible.

I was diagnosed with cystic fibrosis at three days old. I was having trouble with digestion, so they ran a lot of tests, but had no idea what was going on. It was an old midwife who told my parents I could have cystic fibrosis. My parents were in shock; they didn’t think I’d live past my 12th birthday. Thankfully, medication is much better now than it was back then, and the average life expectancy for someone living with CF has gone up to 37.5 years.

I’m 24 now. Explaining cystic fibrosis to someone is hard because my disease is invisible; it's internal. A lot of people look at me and don’t think there’s anything wrong, but they don’t know the battles I face every day just to live. Cystic fibrosis primarily affects the lungs and digestive system. Basically, people with CF have thick mucus in their bodies that sits there and makes their lungs less capable. A lot of us will say we’ve felt like we’re breathing through a straw at some stage of our life.

It takes a lot of time to do my treatments every morning and night. Usually, I wake up early so I can do some exercise and get my lungs working to the best of their ability. Then I do my nebuliser (a device that changes liquid medication into a mist that I can inhale) to help with the movement of mucus on my lungs. Based on what I eat throughout the day, I’ll have my enzymes (it’s harder for people with CF to digest fatty foods), then vitamins, liver treatment, salt replacement medication and different drugs that help me breathe easier.

People often ask me about how I manage full-time work with all of these treatments. Obviously, if I’m unwell, it’s challenging. But because I was born with this disease, the routine has become like brushing my teeth. You have good days and bad days; it comes in waves. Some days, I’m out of breath just walking to the fridge. When you have CF, you’re a lot more susceptible to colds, too. Other people might have a cold for five days and be back on track, whereas my cold could go for two weeks or longer. I’d start antibiotics straight away and if they didn’t make me well, I’d end up in hospital. Every health complication we face can do irreversible damage, so we have to keep our immune systems strong.

I’ve opened up about living with CF a lot in the last two years, but when I was growing up, I was super-secretive. I thought people would judge me because I was the sick girl. My family and my best friend knew all about my disease, but I didn’t go to sleepovers and that kind of stuff because I didn’t want other people to see me doing my treatments. As I've gotten older, I’ve realised it’s important to own what you’ve been given in life. I want to get the message out there.

There’s no cure for cystic fibrosis yet, but there is a breakthrough drug called Trikafta. People who’ve used it describe it as completely life-changing because it dramatically improves lung function. There’s nothing else like it out there at the moment. The thing is it currently costs around $300,000 to get a year’s supply. But we’re fighting to get it on Australia’s PBS (pharmaceutical benefits scheme) so that it’s more accessible. On the PBS, it would come down to something like $6 a month. Having access to Trikafta – something that could help so many people beat their life expectancy – would mean a second chance at life.

My outlook on life is that you never know what tomorrow is going to bring. I went to uni and got a full-time job because I didn't want my disease to be a representation of me. If I've only got this sort of timeframe, what can I do? How can I make my mark? I’m passionate about my job, about photography and content creation. But the biggest thing is for people to remember me as a good person. I'd really like to write a book or give some sort of speech to people about the impact that CF has had on my life, but that’s something I imagine doing when I’m 50 and have outlived the age expectancy. Right now, I just want to be proud of what I've done in the day.

This post was brought to you by our friends at Eco Tan, who are doing their bit to get Trikafta on the PBS. If you’d like to see more people get access to Trikafta, you can call or write directly to health minister Greg Hunt, shadow health minister Chris Bowen and Prime Minister Scott Morrison. You can also join Keely in raising awareness and making noise online wherever you can.