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.




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.

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