Four of out five (81 per cent) people are not aware those with cystic fibrosis cannot meet others with the condition as they could pass on potentially deadly bugs, a new survey from the Cystic Fibrosis Trust has revealed as it launches its annual CF Week to raise vital funds for its emergency COVID-19 appeal.
These striking results show that the public is not aware of the sacrifices people with CF must make daily to stay healthy. But not seeing friends or loved ones in person has become the new normal for all of us during the COVID-19 pandemic – giving an insight into the way people with CF always have to live.
Every day, people with CF have to take action to prevent the spread of infection such as washing their hands or avoiding others who are unwell, making their lives difficult to manage. On top of the everyday risks of infection, COVID-19 has meant months of shielding.
The Trust-commissioned YouGov survey also reveals;
- Almost half (48 per cent) of people do not know cystic fibrosis is inherited from parents
- The majority (87 per cent) of people are unaware that in fact 1 in 25 people carry the gene in the UK
- 42 per cent of people are unaware those with cystic fibrosis spend several hours a day, every day, completing a rigorous regime of treatments to stay healthy and 79 per cent did not know people with CF often have to take over 40 pills every day, just to stay healthy
- 76 per cent said they did not know the sickest people with CF often spend over 70 days a year in hospital to receive IV antibiotics
David Ramsden, Cystic Fibrosis Trust Chief Executive, said:
“These striking findings demonstrate the lack of awareness of the daily struggles people with cystic fibrosis have to manage and it really shows that cystic fibrosis 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 into what everyday life is often like for people with cystic fibrosis.
“It’s inspiring how those living with cystic fibrosis 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 we need to provide help and support to people with CF and their families and are thankful for the generous donations. Please support our Emergency COVID-19 Appeal by getting involved in CF Week.”
There are over 10,509 people in the UK living with cystic fibrosis which slowly destroys the lungs and digestive system.
The survey also suggests younger people are more aware of the condition than older people. 62% of 18 to 24-year-olds said they knew cystic fibrosis is a genetic condition inherited from parents compared to 53% of people aged 55+ and 32% of 18 to 24-year-olds knew about the dangers of cross-infection for people with cystic fibrosis compared to 13% of people aged 55+.
Macauley Tinston, aged 23, who has cystic fibrosis said:
“If both your parents have the CF gene, then there’s a 1 in 4 chance they will have a baby with Cystic Fibrosis and 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.”
CF Week (June 15 – 21) closes with Wear Yellow Day – a fun, annual event held since 2014 which sees people across the UK dress in yellow and hold fundraising events with friends, family and colleagues.
This year, the Trust is inviting everyone to a virtual ‘Big Yellow Party’ to raise vital funds for its Emergency COVID-19 Appeal. The Trust has seen calls to its helpline and requests for grants increase as it has urgently acted to help people with cystic fibrosis, officially deemed as ‘clinically vulnerable’.
People can also take part by donning their best yellow clothing and sharing a selfie on social media with the hashtag #CFyelfie, text please text YELLOW5, YELLOW10 or YELLOW20 to 70500 to donate £5, £10 or £20 or donate to the charity when buying items from eBay throughout CF Week.