1996 Little Telethon Star shares her story of living with CF
Growing up with Cystic Fibrosis was like living with what felt like an expiry date on my life.
In 1992, the year I was born, the average life expectancy of a person with CF was 27 years old. The life expectancy my parents were given for me was 10 years.
Although I made it, my early 20’s were the most difficult years of my life and my sickest.
I’d had countless hospital admissions and courses of IV’s, but my lungs were starting to give out on me.
Just before my 23rd birthday, I was sat in a doctor’s office being told that if I wasn’t put on the list for a double lung transplant soon that I likely wouldn’t see my 25th birthday. But I got lucky. I managed to stay off the list and lasted another few years without needing a transplant.
Cassandra had countless hospital admissions and courses of IV for her lungs
Fast forward 5 years – The year 2020. I was nearly 28. Struggling to stay well. With even more courses of IV’s under my belt, lung function sitting just above 30% on a good day and weighing a tiny 36kg. There wasn’t much left of me and my lungs were struggling with the constant infections.
Then came word of Trikafta. The “miracle drug”.
I was granted Compassionate Access for in February 2020 and I noticed a difference in just 3 short days.
From the first day of medication to my 4 week check-up I had stopped coughing completely, I had gained 3kgs, my lung function had gone up 10%, I was eating everything in sight and I had so much energy I didn’t know what to do with it all.
I never in my wildest dreams believed I’d make it to my 30th birthday but just a couple of weeks ago I did exactly that!
Cassandra celebrating her 30th birthday in March 2022
I have now been on Trikafta for two years and in that time I have gained nearly 20kgs leaving me in a healthy weight range for the first time in my life, my lung function has further improved and stayed stable, I rarely cough at all, I can laugh without ending up in coughing fit and I haven’t had an admission or needed IV antibiotics in over 2 years.
Although it seems overused, this really has been a life changer for me. Not only that, but it has saved my life!
It brings me so much joy and relief that Trikafta is now available to so many who have been waiting their whole lives for something like this and I can’t wait to watch my friends and fellow CFers experience the benefits of this announcement.
This drug is paving the way to change CF as we know it and that is something worth celebrating.