"I don’t think anyone could have predicted when I was a child what my life would look like in 2024"

I was diagnosed with CF at four days old. I was very unwell when I was born, which led to me being diagnosed at such a young age. I grew up in Bromley, where the Cystic Fibrosis Trust headquarters were originally based. My parents got involved in lots of fundraising and I featured in the 30th anniversary CF News magazine. One of my earliest memories is being handed a board game by someone from the Trust! 

My childhood was normal in many ways, just with lots of hospital visits and stays. It was sometimes difficult to explain to friends why I was taken out of school, or why I was playing in the playground with an IV cannula hanging out my hand. I think I worried a lot about explaining CF to other people when I was younger, but I’m much less cautious now. 

I think my advice to a young person with CF today would be to look to the future, not the past. Research, medicine and treatments are always advancing, so each generation will have a different experience to the ones before. I don’t think anyone could have predicted when I was a child what my life would look like in 2024.

After university I became a secondary school maths teacher. It was a job I really enjoyed, but the life of a teacher is quite demanding. Incorporating management of my treatments made it harder, and being in a school environment I was exposed to lots of bugs. It meant there was a toll on my health, and one of the reasons I stopped being a teacher was because it wasn’t compatible with my health at the time. 

Learning resilience 

Through the course of my life, CF has impacted me with lots of smaller setbacks. From one week to the next I don’t know if I’m going to be well or unwell. It means there have been lots of bumps in the road. But as people with CF, we learn resilience as children. It’s difficult to deal with setbacks sometimes but I know I am capable of facing whatever comes my way. 

I think one of the biggest misconceptions about CF is that it only affects the lungs, overshadowing all of the other symptoms and issues. I think the importance of raising awareness of CF today is that people may not know about the dramatic changes brought about by modulator therapies, and even if they do, they may not realise how much further there is to go to beat CF completely and for everyone.

Endless possibilities 

Since Kaftrio, the outlook is very different for many people with CF and we’re all trying to navigate this new landscape. I never used to think of myself as having a limited life, but after starting to take Kaftrio I have realised just how much more I can do now. It has given me a new lease of life and a whole new feeling of what is possible and how long it will be possible for. 

There’s still a long way to go with CF research and the Trust is as important as ever. While Kaftrio is a miracle for me, it isn’t for everyone so it’s vitally important that research continues until we find a cure. Being involved in the Trust’s 60th anniversary has made me reflect on just how different the CF landscape is today than in 1994. I’m looking forward to the next 30 years and being involved in the 90th anniversary!

A big thank you to Rob for sharing his story. If you have a story that you would like to share, please email [email protected].

For 60 years we've worked together, sharing moments of frustration, despair and hope, overcoming challenges, and celebrating breakthroughs. Always learning and moving forward.  

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