My Cystic Fibrosis Diary



At last our new book, all about Cystic Fibrosis, is here! We are loving our new, more cuddly look too. The book is really easy to read and tells you all about what we do in your body, how you get us from your parents and the problems we can cause.

If you want to see what Alina has written about, click or tap on the YELLOW button below to download her first few pages.

This is a no holds barred, reveal all, kiss and tell extravaganza to explain just what the Dinky Amigos have done to cause Cystic Fibrosis in your body.





Reviews for My DNA Diary: Cystic Fibrosis

“It was amazing and very factual” – 12 year old, June 2018

“I loved how this would appeal to all. Lovely approach to biology and very enjoyable to read. Thank you for letting us have a peek.” – Kayleigh Maher, July 2018

“Suitable for home or school, teachers and parents can be reassured that the science is correctly explained. The book enables those without a background in genetics to introduce the subject, and to learn themselves. And, for children, the book does an excellent job of introducing genetics concepts and terminology in a fun way, potentially inspiring some of tomorrow’s scientists and clinicians to continue their learning journey.” – Genomics Education, December 2019

“Wow wee! What a very in-depth fascinating book you’ve obviously spent a lot of time breaking it down to be in a digestible form for older children. It’s pretty amazing I’d say! I hope one day my little Archie who is 4 and a half months old will get to read it. ” – Andrea Michelle, December 2019

“I found the book was written well and made it easier to explain CF to my 12 year old son as I’ve now got a 1yo with CF. It also helped me to understand his condition more in depth. A good informative read.” – Pam Wilks, January 2019


A bit of science

Alina talks about something called an “F508 deletion”. Most people with Cystic Fibrosis have at least one of these. We live on a bit of a rough estate, though and there are over 2,000 ways in which the Dinky Amigos can run riot and cause Cystic Fibrosis.  There are so many people with the F508 deletion that scientist have started making drugs to help.

These ways are called variations (or mutations) and they all have weird names. Scientists and doctors called the variation named above: Phe508del. (See … weird names!).

There are several other variations that are quite common and there are tests for them all (depending on where you live, you might get them when you are a baby).  All the other variations are much rarer and some are really hard to test for.

We have been made to confess some of our misdemeanours

Orkambi is a drug designed to help cystic fibrosis sufferers. Currently it is proving too expensive for the NHS in the UK to make it available to everyone.