Introducing our new resource for children affected by CF
What is Cracking the CF Code?
It is not an average dictionary! It’s an epic secret agent adventure that helps children understand all the words and terminology they should know to be masters of cystic fibrosis. Alongside kid-friendly, professionally-approved definitions, you’ll find beautiful illustrations, true stories and the real life character avatars of our YAG members (look out for mine!).
Why did YAG create it and why do you think it’s important?
YAG is always looking for projects and campaigns that help to make our CF community better. Two years ago, when we first thought of this idea, we thought it would be the perfect project to boost the knowledge and confidence of younger people affected by CF and to really help them understand this very complex condition.
How did YAG create it?
It was a very long process! Once or twice a month for two years we would meet on Zoom and work online to create the dictionary. First, we brainstormed words and terms that we needed to include, as well as a name and theme for the dictionary. When we had a good list, we split into smaller groups and wrote each definition. Then we came back together as a big group and tried to stitch together everyone’s ideas to create the perfect definition. This also led to each member sharing their own anecdotes about treatments or hospital, which we added in.
Then we had to add in the illustrations, created by Bahar, who works at the Trust and helps out at YAG, and get the definitions checked by doctors, psychologists and parents. We then sent it all off to a graphic designer to put together and over a few months, tweaked and perfected the overall design. We think it’s brilliant and it’s definitely one of my proudest achievements!
What was the most difficult thing about working on it?
At first, it was really tricky to write in a style and tone that is easy for kids to understand. The words we were defining could be very medically complex, or even a little bit scary, so it was really important that we made the dictionary clear, fun and accurate. It took a while for us to master it but we’re certain that we got there in the end.
What did you learn from the experience?
I learnt that everyone at YAG had their own personal experience growing up with CF (or with family members with CF) so I got to find out what things like a bronchoscopy or a port were! And on a broader level, it was really helpful to learn the process of creating a book like this, working with a large group and the power of words!
What do you think the best thing about it is?
I think the concept that we are secret agents working really hard to 'crack the code' is super clever. I think it provides a sense of satisfaction and pride when you manage to unpick that lock and you’re able to use those big scary words. I also think my character is adorable dressed as a spy!
What’s next for YAG?
We’re still brainstorming our next big project but right now we’ve finished making the 'Your Life and CF' survey and are working with researchers and psychologists to discuss psychology and annual reviews. We’ve got big things cooking and we can’t wait to dive right into a huge project that will hopefully be just as brilliant as Cracking the CF Code!
CF Youth programme
Are you a young person with cystic fibrosis, or are you close to someone with the condition? We have loads of events, support and opportunities for you to get involved with!