Challenge of living with cystic fibrosis is invisible and often the condition is unknown or misunderstood

Aug 16th '23

Cystic Fibrosis Trust was one of the chosen charities to receive a donation from Betting and Gaming Council (BGC) members at this year’s Britannia Stakes race at Royal Ascot. The challenge of living with cystic fibrosis (CF) is invisible and often the condition is unknown or misunderstood, so we’d like to take this opportunity to share what Cystic Fibrosis Trust do and the difference this donation will make.


Cystic fibrosis is a genetic life-limiting condition which causes a thick mucus to build up in the lungs, digestive system and other major organs causing a range of challenging symptoms. It affects more than 10,900 people in the UK and one in 25 of us carries the faulty gene that causes it, usually without knowing. Cystic fibrosis comes with a gruelling treatment regime that can involve hours of physiotherapy and taking many tablets a day just to stay well. The median age of death stands at just 38 years old.


The recent development of new treatments is bringing hope for the potential of improved health and life expectancy. But these drugs don’t work for everyone and are not a cure. People with cystic fibrosis continue to live with a life-limiting condition that impacts their life choices like education, work and starting a family.


“I think people forget that living with a chronic illness like CF is like having another full-time job – we’re constantly managing it and never have a day off. I’m so happy that other people with CF can now access drugs like Kaftrio, but it’s bittersweet – these drugs don’t work for my type of CF, and it feels like everyone’s at a party I haven’t been invited to.


Although modulators aren’t a cure, I’m hopeful that there will soon be a drug that targets my mutations, but I always wonder, how long that will take? What state my health will be in? Will I even be alive? At the moment I’m just trying to live a ‘normal’ life – I hope that one day the burden of CF will be reduced for me, so that I can live my life to the fullest.” – Cicely, 24, living with cystic fibrosis


To address this, and support people like Cicely, the donation from Betting and Gaming Council will help fund cutting edge research to find new ways to tackle the underlying cause of the condition, as well as finding new treatments for harmful lung infections and other symptoms of CF like cystic fibrosis related diabetes, gut issues, and some cancers. The Trust is also looking into genetic therapies, which offer the potential of being able to treat everyone with cystic fibrosis, including those who can’t benefit from the current medications.


Anne Shinkwin, Director of Fundraising at Cystic Fibrosis Trust said: “A huge thank you to BGC and their members for their generous donation which will help provide support to everyone that needs us, as well as fund lifesaving cystic fibrosis research. Cystic fibrosis is a life limiting genetic condition that causes a wide range of challenging symptoms; symptoms that can impact people’s lives, every single day. We won’t stop until we find an effective treatment for everyone with cystic fibrosis.”


To learn more about Cystic Fibrosis Trust visit their website here.


You can also hear from Kieron who shares his experience living with the condition in the charity’s ‘You don’t see CF’ campaign video here.


Source: BGC