As CF Week shines a spotlight on the challenges people with CF face in balancing their condition with everyday life, the poll reflects how little is known outside of the CF community of the sacrifices made every day to stay healthy.
The gap we need to bridge
The YouGov poll also found that 87% of people are unaware that 1 in 25 of us carries the gene that causes CF, 76% were unaware that some people with CF may spend over 70 days a year in hospital on IV antibiotics, and 79% did not know people often have to take over 40 pills every day.
Recent research carried out on behalf of the Trust revealed that public awareness and understanding of CF is a key concern among the CF community. One of the themes to emerge from the stories being shared by the CF community in the run up to CF Week is that while COVID-19 has meant many have had their first introduction to life away from friends and family, the ‘new normal’ is a familiar challenge to people with cystic fibrosis.
Awareness among younger people
The survey also suggests younger people are more aware of the condition than older people. 62 per cent of 18 to 24 year olds said they knew CF is an inherited genetic condition compared to 53 per cent of people aged 55+ and 32 per cent knew about the dangers of cross-infection compared to 13 per cent of people aged 55+.
David Ramsden, Chief Executive of the Cystic Fibrosis Trust, said: “These striking findings demonstrate the lack of awareness of the daily struggles people with CF have to manage and it really shows that CF is still very much an invisible illness. In many ways, the adjustments many have had to make because of COVID-19 will give an insight to what everyday life is often like for people with cystic fibrosis."
The resilience of people with cystic fibrosis
Macauley Tinston, aged 23, who has CF, reflected the determination of the community: “Living with CF comes with challenges. But I’ve never let it dictate my life. I’m in control of it, not the other way around and with the right treatment and support, there’s nothing stopping people like me living life to the full or doing anything that people without CF can do.”
David paid tribute to the CF community, saying: “It’s inspiring how those living with CF face challenges head-on with remarkable resilience but living with the condition is anything but easy. Every day they must weigh up risks of catching infections that could damage their lungs and result in lengthy hospital stays, on top of the rigorous daily exercise and treatment regime to stay healthy.”
Now more than ever the Trust needs to provide help and support to people with CF and their families. Get involved this CF Week and support our Emergency COVID-19 Appeal.