"If research can focus on ways to make treatments simpler or more effective, it could mean so much"
Laura’s story
Treatments definitely set the tone for the rest of the day. Even though I’ve never known any different, it can still feel like a huge burden. On the positive side, in its own way, it does create some structure to my day, for example, mornings are usually dedicated to my first set of treatments. While they are very time-consuming, I know they’re necessary to keep me as stable as possible.
Some days, physio and nebulisers are more effective than others, helping me feel clearer and slightly less breathless. However, when they’re not as effective, I can feel unwell, with more sputum and more breathlessness, and if I’m particularly unwell, I’ll need to add extra physio sessions. This unpredictability can be frustrating, as the treatments are tiring - both physically and mentally - and it can make it difficult to plan my day when I’m unsure how I’ll feel after treatments.
To me, ‘treatment burden’ means how much effort, time, and energy is required just to manage my condition. It’s not just the physical act of doing treatments but also the mental load of organising them, planning my day around them, and the emotional strain of knowing they can’t be skipped, no matter what. It’s the feeling that your life revolves around these routines, leaving little room for flexibility.
That said, treatments are also what allow me to keep going, and I’m grateful for the options that exist. If research can focus on ways to make treatments simpler or more effective, it could mean so much - not just for improving our health but also for improving our ability to live life more fully.
About the VALU-CF STUDY and how you can get involved
CF researchers involved in the VALU-CF study are asking people with CF to take part in a survey. They want to find out which aspects of CF treatment people find most burdensome, and to gauge the importance of reducing these burdens relative to other treatment outcomes, like improving lung function.
For example, we’d like to know if you would choose a treatment that is less disruptive to your day to day life, over a treatment that was more time consuming, but gave you a bigger improvement in your lung function? We plan use what you tell us to improve the assessment of new CF treatments.
Professor Siobhán Carr from Royal Brompton Hospital in London who is leading the study
Our research goals
Through our research goals we will accelerate progress towards a future where everyone with CF can live a life unlimited.