More than 10,900 people in the UK are living with cystic fibrosis (CF), but awareness of the condition remains low. Cystic fibrosis is an invisible, life-limiting condition.
People with CF can appear perfectly healthy on the outside, but inside have a chronic illness. Challenges range from continuous coughing, ongoing lung infections to damage to the digestive system and weakened bones and joints.
While those with other conditions may be able to meet others like them, or attend face-to-face support groups, people with cystic fibrosis cannot do this due to the risk of passing on potentially deadly infections to each other. Kieron, 26, is the face of a new awareness campaign, launched across the UK.
His face will be on billboards and adverts to raise awareness of the realities of cystic fibrosis. Kieron said: “I was diagnosed with cystic fibrosis at 6 years old, which is quite late.
"The heel prick test was missed when I was born, and as a result the first years of my life were very difficult with lots of hospital visits and ill health. The eventual diagnosis was a huge relief for me and my family as we finally had an answer.
“Growing up with cystic fibrosis, I always just wanted to fit in and be like everyone else. I tried to keep up, whether that be in football or joining in in other activities, but I was always noticeably smaller than everyone else and so I struggled with confidence.
"I would always try and hide my CF from everyone in school, in fear of it making me look different to everyone else. As I got to my teenage years, I had a few chest infections which required IV antibiotics, which made it even more difficult to hide my CF and led to a lot of anxiety.”
As part of the awareness campaign, Kieron is also the face of a campaign film about the hidden nature of CF. He says: “You don’t see the hours coughing. Or the hours laughing. You don’t see the mountain of pills I’ve taken. The hours of physio.
“You don’t see me having to avoid meeting others with the same condition. The chance of catching an infection is simply too dangerous for us both. You’ll just see me. See me grow. See me cough sometimes. See me try to live a life unlimited.”
Cystic fibrosis is an inherited disease caused by a faulty gene. Because it’s genetic, CF can't be caught or developed, however, one in 25 people carry the CF gene.
For someone to be born with CF, both parents must carry the faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
Kieron says that the pandemic helped some of his friends understand the condition. “When covid hit, I was living on my own in Bristol and it was a very scary time. It forced me to be a bit more open about my CF.
"Previously I’d hidden it a lot, but I had to tell a lot of people – including my employers and friends, so they would understand why I had to move back home and isolate for 3 months. My friends were very understanding and saw a lot more of the risks and impacts CF has on my life,” he explained.
Kieron now takes Kaftrio, a modulator drug that is available to some people with cystic fibrosis that helps increase lung function and limit the damage cystic fibrosis can cause. He said; “Before Kaftrio, I was spending most days congested, and would have to clear my throat a lot around other people, which made me very self-conscious. Not having to do that all the time is huge.
“I’m not worrying about it every second of the day. The feelings are still there, but they have come down a lot. I feel a lot clearer in my chest, and mental health is better.”
The modulator has been available to adults with cystic fibrosis in the UK on the NHS since August 2020, and to children aged 6-11 since January 2022. Thousands of people have reported miraculous changes to their health since receiving Kaftrio, however Kaftrio is not a cure and the median of death is 38 years old.
Kieron is now focussing on the future. “Growing up I was told 31 was the life expectancy for people with CF which used to scare me quite a bit, but now I’m 26 and happy with how well I am. My partner and I are also considering exploring options for IVF and children in the future, something I never thought would be possible. So life is all very exciting.”
