“I’m so much more than my CF”: Sarah, our CF News guest editor

When I left education I had big ambitions. But I ended my degree on a part-time basis when CF stuff started getting in the way (yet again!). Then, shortly after starting my working life, I had a period of eight months going in and out of hospital and being unable to work. Starting Kaftrio has helped me get back on my feet and with this new-found health I’ve been ready to start following my dreams again. 

I’m now 24. I live on my own in London and I love the independence this wonderful city has allowed me to build for myself. I have been on quite a journey with my CF over the years, but I am so much more than that too. I am a book-lover, a theatre-goer, a daughter, a friend, a sparkling queer woman, a creative, and more. 

CF is still a part of my daily routine and it always will be, which is why it is so important to have an organisation such as Cystic Fibrosis Trust to raise awareness of CF and promote the research and advancements needed to make those of us with the condition live long, fulfilling lives.  

CF is so often an invisible illness which can be hard to understand if it’s not your daily reality. The more awareness there is for invisible disabilities and conditions, the more understanding will be possible, and the world will then change for the benefit of everyone. 

I am hopeful that the modulators that have transformed so many of our lives will continue to do good and, on a personal note, help me stay out of hospital going forward. The changes to how we approach CF in recent years have also been vast. I would like to see mental health and home monitoring to continue to be prioritised. 

This is why I am excited about so many of the upcoming studies and new technologies which aim to do exactly that including a new home diagnostic kit for Pseudomonas aeruginosa. I had the privilege to talk with the researchers of this project, which you can read more about here. 

I try to be a participant in as many trials as I can. The feeling of helping others with CF by putting myself forward for research makes me feel closer to our community, even if we cannot meet each other in person. I also have an obsessive interest in human biology and medicine and love that I can say I’ve been on both sides of the research process in the past. 

I wanted to be a guest editor for CF News because I am grateful to the Trust for so many things and I wanted to give back to this organisation. I am also an aspiring writer, so this is a great opportunity for me, and I’m happy to be given the chance to write something as personal as my CF. 

Given this issue is coming out in June, I couldn’t not mention Pride month and that side of my identity as well. I had a conversation with another LGBTQIA+ person with CF who helped me gather my thoughts and helped enormously when writing the piece you can find here. 

I hope you enjoy reading the newsletter I have put together for you. I’ve certainly had fun writing it. 

~ Sarah ~