Living with Cystic Fibrosis can mean:
- Taking up to 40 tablets per day to help digest food
- Up to two hours of physiotherapy treatment every day
- Taking nebulised drugs (i.e. in an inhaled mist) every day
- Regular, but unpredictable, two-week hospital admissions each year
- A shortened life-span (approx 38 years on average)
- Never knowing what it feels like to live a ‘normal’ life because of the impact of numerous hospital visits each year
In the 1950s, few children with Cystic Fibrosis lived to attend primary school. Today, because of the advances in research and medical treatments, the quality and quantity of life for a person living with CF has significantly improved. However even with the advances in treatments, about half of those with Cystic Fibrosis will die by their late thirties.
Current Cystic Fibrosis treatments have a large impact on day-to-day life, are often unpleasant and take up a lot of time. For children, Cystic Fibrosis can mean a lot of time away from school, while for young adults it can interfere with studies at University or require frequent absences from work.
What is it like to live with CF?
“One way to gauge how CF lung disease might feel is to breathe for a while through a short length of garden hose. After a short time, you will feel an increasing urgency to breathe more than you are able to – you will probably make increasing efforts to move more air in and out of the hose, but your lungs cannot do that, no matter how much effort is put into it.
Now imagine this feeling of “not enough breath“, starting off imperceptibly, steadily increasing, never halting or reversing as you grow up through your teenage years. Expecting to enjoy life as it develops you are faced with an increasing amount of mucas and fluid trapping in your lungs that you relentlessly attempt to cough out to be able to breath and survive. The risk of getting a serious CF-specific lung infection from friends with Cystic Fibrosis means that you can not even meet in person to gain much needed support.
Your condition progressively affects your ability take part in any activities or even to breathe enough to satisfy your most primal biological instinct of humans – to satisfy the hunger for air.
– Dr. D. Parsons, Chief Medical Scientist, Respiratory and Sleep Medicine, WCH