"It’s a reminder that there’s a lot more to me than my CF": 10 years of our Youth Advisory Group

Could you share some of your standout moments from your time with YAG? 

Lizzie: A major highlight has been working on our current phlebotomy project, which is looking at needle phobia in children with CF. It’s something I’m passionate about as I have personal experience of needle phobia. I’ve been involved in designing questionnaires for healthcare professionals to understand their perspectives, which has been really cool as I’ve never done anything like that before. 

Nicola: One highlight was working on the Kaftrio survey, which we launched shortly after the modulator became available. It was a critical opportunity to ensure young people’s voices and diverse experiences were represented. Another massive standout was the Cracking the CF Code dictionary project. Coming back later as a co-facilitator and seeing that initial idea grow into a beautifully illustrated, printed resource was incredibly rewarding.

CF can be an isolating condition due to cross-infection. What was your experience of connecting with others with cystic fibrosis before YAG? 

Lizzie: I had never knowingly met or spoken to anyone with CF before joining YAG. Finding YAG made me feel less alone in my CF. It’s great to talk to people who have had completely different journeys. For instance, I wasn’t diagnosed until I was eight, whereas others have been in and out of hospital since birth. But, despite those differences, we share so much in common

Nicola, what’s it been like going from being part of YAG to being a co-facilitator of the group? 

Nicola: It’s been really rewarding. Being a member of YAG gave me so much confidence when I was a teen and so many opportunities to engage with various aspects of the Trust, so it’s been really nice to be on the other side of that now and continue to support the group. 

Lizzie, you mentioned that sometimes, when you’re living with a chronic condition, it’s important to just acknowledge when things are tough. How does YAG help with that? 

Lizzie: Yes, sometimes CF is just rubbish, and it’s okay to have a bad day. In the wider world, people often tell you to “have a positive mindset” or “go for a walk”. At YAG, if you’ve had a bad day, people don’t try to force solutions on you; they just say, “I’m sorry, I hope tomorrow is better.” Even if you don’t feel like talking, you can just sit quietly and listen.

The CF landscape has changed dramatically over the last decade. What are your hopes for the next 10 years?

Nicola: Modulators have been life changing, but they don’t work for everyone. Some people aren’t eligible, and others, like myself, can’t take them due to severe side effects. My hope for the next 10 years is that we don’t forget this different side of the story. We need a concerted effort to research and develop alternative treatment options so that every single person with CF has a viable option moving forward. 

Lizzie: We also need much more research into the additional conditions and comorbidities that develop as the CF population ages, such as cardiovascular disease.

What has being part of YAG given you? 

Nicola: Something I’ve really valued is just the space to talk about both CF-related issues and non-CF-related issues with people who just kind of get it and without it being in a parent-led or clinical setting. 

Lizzie: It’s reminded me that there’s a lot more to me than my CF. For every single member of YAG, having CF is probably the least interesting thing about them. The fact that they’ve got CF is kind of our common denominator, but then our friendships are built on so much more.

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