“I wish more people understood that although new treatments have transformed many lives, CF hasn’t disappeared”: Lia’s story

My name is Lia, I’m 21 years old, and I recently graduated with a 2:1 degree in Zoology. I also run my own pet care business, work as a model, and enjoy boxing, which has become a big part of my fitness routine and has given me confidence. 

I was diagnosed with CF as a baby and it’s all I’ve ever known. Growing up, I always tried not to let CF define who I am or stop me from chasing opportunities. Whether that’s modelling, boxing, studying for my degree or building my own business, I’ve always wanted to show that people with CF can achieve incredible things, even if our journey looks a little different. 

Managing the unpredictability of CF 

Like many people living with CF, there have been times when I’ve had to pause life because of hospital admissions or exacerbations, but I’ve always tried to make sure that those setbacks don’t define my future. Some days my body tells me to slow down, and learning to listen to it has been one of the biggest lessons CF has taught me. 

Physically, CF can be unpredictable. One week I can feel really well, and the next I might be admitted to hospital with an exacerbation. Mentally, that unpredictability can be difficult. It can sometimes feel frustrating when people don’t realise how much work goes into staying well. I’ve also learnt that it’s okay to have difficult days and that looking after my mental health is just as important as looking after my lungs. 

People often only see you when you’re well, but they don’t see the daily treatments, hospital admissions, antibiotics, fatigue or the emotional side of living with a lifelong condition. 

It was difficult not to feel left behind 

I wish more people understood that although new treatments have transformed many lives, CF hasn’t disappeared. When CFTR modulators like Kaftrio first became available, there was an enormous amount of hope within the CF community. 

For many people, treatments were completely life-changing. But because I wasn’t able to benefit from Kaftrio, that period brought quite complicated emotions for me. I was genuinely happy for the people whose health and futures were being transformed, but at the same time it was difficult not to feel left behind. 

There was suddenly so much discussion about people with CF being able to make plans for the future, experience fewer hospital admissions and live more freely, while I was still facing the same uncertainty and treatment burden. It could feel isolating to know that such an important breakthrough existed but was not something that could help everybody. 

I recently started taking Alyftrek and it has brought renewed hope, but the experience has also shown me why continued research is so important. Every person with CF deserves a treatment that works for their needs and genetic profile. Nobody should feel forgotten simply because they fall into a smaller group or respond differently to the treatments currently available.