New data shows tough reality of living with cystic fibrosis
The new data shows more than a quarter (28 per cent) are managing diabetes, nearly a quarter of adults (over 16 years) have liver disease and on average people are spending 13 days a year in hospital, receiving IV antibiotics. It also shows the complexities that come with living longer with CF – such as higher numbers of people developing of some types of cancer.
Thanks to continued investment in treatment and care, for the first time, the report also shows that half the babies with CF born today are predicted to live to at least 70 years old. But that means that half are predicted not to live to this age.
Our latest registry data is a reminder of how hard life is for people living with and affected by CF across the UK. And, despite the advances in treatment in recent years, there are many challenges to overcome.
David Ramsden, Cystic Fibrosis Trust Chief Executive
For the first time, the report also shows that half the babies with CF born today are predicted to live to at least 70 years old. This is extraordinary progress, but carries an urgent reminder that half will not reach this age, and sadly, life is still too short for too many – with the median age of death being just 36 years old last year. This must change.
The Trust is also today launching its new five-year strategy, reflecting the views, hopes and ambitions of thousands of people affected by CF and announcing Michelle Shore, who lives with CF and brings extensive legal and leadership expertise, as its new Chair of Trustees.
The charity’s goals are:
- Living with CF: tackling the daily challenges of living with CF
- Future challenges of a changing CF: responding to emerging and future health challenges in CF
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No one left behind: addressing health and socioeconomic inequities
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Stronger together: uniting everyone affected by CF for change
My genetic mutations meant I was initially not able to benefit from the life-changing modulator medicines that have transformed the lives of many people with CF in recent years. For almost five years, I watched as these treatments dramatically improved and stabilised the health of others, while my own condition continued to decline.
Michelle Shore
I want to be able to offer reassurance to those with CF who might be feeling left behind, that they have my voice and Cystic Fibrosis Trust behind them, lifting the limits that CF brings.
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