“Hi there!! My name is Phoebe, I’m 24 and I’m from Sydney, Australia. I have Cystic Fibrosis and a bunch of other chronic illnesses; mostly co-morbidities from my CF, but a few other bits and bobs also. CF over the years has caused Type One Diabetes, reflux, chronic kidney stones, bowel blockages, osteoporosis, and a whole host of other issues. I also have Epilepsy, chronic pain, Endometriosis, Chronic Migraines, severe Gastroparesis, a whole bunch of mental illnesses and other things. I’m also a survivor of Sepsis and Septic Shock.
Two years ago I was end stage CF, not eligible for transplant. I was never home and when I was would be lucky to have a week home (I would literally spend months at a time in hospital and on IVs). I had about 17% lung function and didn’t have long left to live; I got Trikafta on compassionate grounds and it saved my life – unfortunately Australia has had a huge fight to fund Trikafta and many people lost their lives and people like myself almost lost my life unable to get access to this life saving medication – it is no cure, it is not even close, but it is a miracle and Friday, after two and a half years, being knocked back four times and 26 countries already funding it – we did it, people like myself worked so hard behind the scenes so everyone with CF can get the chance to experience this. AND WE DID IT!!!
I now have a lung function in the 30’s, I’m hardly ever in hospital, I have a part time job, I’m traveling later in the year (as traveling and seeing the world is a major passion of mine), I’m moving into an apartment of my own this year and I’m doing my dream double bachelor of psychological science and criminology.”