"I’m not thinking about where I could be limited by CF. For the first time, challenges are logistical, rather than health-based" - Declan's story

Early life

I was diagnosed with CF at three weeks old and since then it’s affected everything in my life. I didn’t have a choice with sport, I had to do it, but my whole family is very sporty so I enjoyed being really active growing up. Me and my parents were very resolute that my CF wouldn’t stop me doing anything, and my parents in particular were quite bloody-minded about that. 

In fact, CF was so ordinary to me that I grew up thinking various aspects, like treatment burden and physio, was normal, but then when friends came round they were always surprised by it. Once, my brother had a friend round and when my dad was patting my back, he thought I was being beaten!

With CF, it’s always about trying to fit stuff in. I played rugby, water polo and cricket in school and it was very time consuming, on top of the already time consuming nature of CF.

When I first moved away from home I found it quite difficult. I had structures in place and suddenly had to create my own structures and make treatment consistent.

I lived in Madrid for five years and in Spain there was less infrastructure around CF. It made me realise how fortunate I was that the set-up for CF care in the UK is so good. Out there, I had one doctor who did everything, and in the UK I had a whole team. We take the sharing of information and data from the CF Registry for granted. The level of care I received in the UK was huge and experiencing not having that made me grateful. I moved back to the UK with my now-wife partly because I wanted to have a better quality of care again.

Life on Kaftrio

I’m now on Kaftrio, and even though I grew up very fit, it has improved things. I’m now in the position where I can do a marathon, but only because of Kaftrio, but because I had that care from my CF team and my parents growing up.

It’s been night and day on Kaftrio. I was going climbing every weekend I could, because I could. I’m 6ft tall, and was about 65kg. Within a few months I was 75kg. I wondered – is this what it’s like for everyone else?! It’s very, very different. I was into cycling growing up and I wondered, if this makes sense, if that’s what it’s like when athletes are doping, because every single day was my best day.

Although I’ve been relatively healthy most of life, I suddenly started realising I needed to plan my pension. Less fatalistic way of viewing the world and future orientated. 

Me and my wife are going through IVF at the moment. I’d like to be able to have a kid, and having that available on the NHS is huge for us. I have lots of other goals as well – me and my wife want to see as much of the natural world as we can. I also want to be as good a teacher as possible as well. I’m now at the stage of figuring out which way I can go with that. Being career-focused is a privilege. I’m not thinking about where I could be limited by CF. For the first time, challenges are logistical, rather than health-based. Modulators have made my life plans grander, and I know what a role the Trust played in making sure as many people as possible can benefit from them. That’s why I’m fundraising for the Trust in my ultramarathon.

Explaining CF

It was always tough explaining CF in a way that is understandable and also lighthearted. It’s a life-limiting illness and explaining that, when I was a kid, to another eight year old was hard. Luckily, I had friends who were good at explaining it to other people. They saw me taking Creon so they understood that and the treatment load. 

It came up early when I was first getting to know my partner. My wife’s mum is a nurse and her first impression was surprise because she’s only seen people who are quite ill in hospital with CF. I was always quite open from the start, and that’s helped with communicating my CF.  

I explain my CF to students that I teach as well. They might see me taking pills and because I’m a science teacher, it’s a great learning opportunity. I think it’s important to tell them that I have it and be open about the challenges of CF. It’s a fairly rare opportunity for them to hear a first person perspective and learn more about it. I’m passionate about genetics – so it’s a great lesson! 

The first time I mentioned it to a class, a child went away and googled it and told another teacher I was going to die. Luckily now I can temper it and say that with current treatments there have been lots of advances and will still be some to come. Some of them get it, they have parents with lifelong conditions too. 

Running an ultramarathon

I have two older brothers, neither of whom have CF. There’s a seven year age gap, but being fitter has allowed me to do more things with them. I can enjoy a long bike ride. One of them lives in Spain, and I went over there last Christmas and managed to get 100km of running done in a week.

I did a half marathon last winter in December, and have just completed a 27 mile trail run round the coastal path of Pembrokeshire National Park. It’s a part of the world I love, and was an encouraging way of keeping training throughout the winter.

It makes me feel good. I live in a good place for running, which definitely helps. A lap of the local area is 15km, and I’ve done a lot of laps over the winter. It’s also a windy part of the world and sometimes I end up running at 45 degree angle! I like being in the outdoors, and no one cares if you’re slow when you’re trail running. Me and wife love climbing so we’ve been doing that alongside the training – it leaves time for the stuff we like doing. I’ve been able to explore where I live a lot more, and see things I haven’t seen before.