What is Cystic Fibrosis?

Cystic fibrosis is a genetic disease that affects 1 in every 2500 Australians. The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

Living with CF involves extensive daily care, with frequent absences from school and work for hospitalisations and treatments, particularly as the disease progresses. A daily regime on a good day can involve more than 20 tablets, with enzymes to absorb food, a high calorie diet, antibiotics, other inhaled medicines, chest physiotherapy and exercise.

Trikafta is the most effective medicine that treats the CF cause, helping 90% of people with CF. Many of these people are also not eligible for previous medicines that treat the cause, and are relying on treatments that focus on the infection and inflammation that occurs as a result of these thick secretions rather than the underlying cause of CF.

Whilst the average life expectancy for someone born today is increasing, thanks to medicines such as Trikafta, currently half don’t make it past 30*. We don’t have time to wait.

*CFA 2020 Data Registry Report (see links)