“Be proud of your CF – don’t try to hide it.”

We caught up with Kieron to hear more about his involvement in the campaign, his life with CF and the importance of raising awareness.

Hi Kieron! Thank you for chatting to us. Please tell us a little bit about yourself.

Hello! I’m Kieron. I’m 26 years old, have CF, and am a qualified nutritionist and fitness instructor. My passion for nutrition translates into a love of cooking and discovering new recipes.

I am also a huge Manchester United supporter and spend a lot of time in the gym and training in jiu-jitsu. 

What was your childhood like growing up with cystic fibrosis?

I didn’t get diagnosed with CF until I was six due to a missed test, so the early years of my life were very tough. Growing up, I wanted to fit in and be like everyone else, but it wasn’t easy. I was noticeably smaller than my peers, and I struggled with confidence.

At school, I always tried to hide my CF as I didn’t want to appear different, but this often meant I skipped certain medications, like Creon®, out of fear of being judged.

As I got to my teenage years, I had a few chest infections requiring IV antibiotics, which made it even harder to hide my CF and led to a lot of anxiety.

How did you get into fitness?

My friends and I started going to the gym when we were 16 years old, and this is where I realised I had minimal muscle and was quite underweight. The gym empowered me and showed me that I have complete control of certain aspects of my life. 

How does CF impact your day-to-day life now?

The biggest thing for me is keeping up with my medication and physio regime to prevent any deterioration in my health, but this can be time-consuming. The other impact on my day-to-day life is the mental health side of CF.

Having CF forces me to make the most of every day, so I try to keep a positive attitude as much as possible.

What do you find most challenging about living with an invisible condition?

The most challenging thing is having to explain your condition to new people. It’s so easy to hide cystic fibrosis (when I’m well), but this can leave me isolated and make me feel like no one truly understands me or my condition.

What do you think are the biggest misconceptions about CF?

The biggest misconception is that all people with CF are very ill, coughing constantly and need oxygen 24/7. Although people with CF struggle with these symptoms, CF can affect us in many other ways. The invisible side of CF – the mental struggles, digestive issues and the amount of medication we have to take often gets ignored.

Why did you decide to get involved in the awareness campaign?

I wanted to get involved because I had a story to share. And if sharing my experience would benefit the CF community or inspire even one young person with CF, then it was worth doing.

Why is raising awareness of CF important?

Without awareness, people won’t understand the condition, making it more difficult for people with CF to feel understood in society. Raising awareness can also increase donations to the Trust, which can fund future trials and improve access to new, game-changing medications!

If you had one bit of advice for a young person with CF today, what would it be?

Follow your passion and be proud of your CF. Don’t try to hide it or be worried about judgement.

Looking to the future, what are your hopes for the CF community?

I hope that children with CF and their parents can look to the community for support and realise that although CF is a challenging condition, there are so many positive things currently happening for people with CF.

Thank you so much for your involvement, Kieron, and for sharing your story with us.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.

Cystic fibrosis is an invisible condition, you can’t see what it does to the body. But it’s not invisible to the thousands of people whose lives are dominated by it every single day.

You’ll never see the hours of coughing, the mountain of pills or the trips to the hospital. You’ll just see a person with an invisible condition, trying to live a life unlimited.

The challenge of living with CF is invisible. Except to the ones who live it.