4 Must-Read Books That Revolve Around Cystic Fibrosis

PatrĂ­cia Silva, PhD avatar

by PatrĂ­cia Silva, PhD |

Share this article:

Share article via email

Books that deal with a disease that’s affecting you or your loved ones can be sometimes hard to read, but they can also remind you that you’re not alone. There are other people going through the same struggles as you are and they have found ways to cope. These books also help spread awareness and make you feel represented in different ways.

MORE: Novel about girl with cystic fibrosis to help raise funds for the disease. 

“Breath” by Donna Jo Napoli
Breath is a retelling of a classic fairytale, the Pied Piper. The story is told from the point of view of  one of the characters mentioned in the original tale, a boy named Salz, but in this re-telling, Salz suffers from CF. The author has a good grasp of historical fiction so the story is believable and entertaining.

“Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me” by Jay Gironimi
The author, Jay Giromi, has CF and is 100 percent unapologetic about how that makes him feel. This book is filled with Jay’s sharp wit, dark humor and gratuitous amounts of swearing as he  guides readers through his journey with this disease. He’s not trying to go for the “stay positive and things will work out” route. In fact, as he says in the book, “Many cystic fibrosis patients face the disease and its obstacles with poise and grace. I tend to do it with a gratuitous amount of swearing.”

The Cystic Fibrosis News Today forums are a place to connect with other patients, share tips and talk about the latest research. Join today!

“My Foreign Cities” by Elizabeth Scarboro
The story centers around the author and how she went from never wanting to settle down to deciding to let go of her preconceived ideas of what her life should look like when she fell in love with Stephen, who happened to have cystic fibrosis. This memoir gives readers a glimpse into her married life — the ups, the downs and everything in between — and how she and her husband have handled it all, both together and surrounded by family and friends.

“Alex: Life of a Child” by Frank Deford
If you have CF, you’ve probably heard of this book by now. Frank Deford wrote this book in the ’80s as a way to deal with his young daughter’s death and a way to put the spotlight on cystic fibrosis. He describes Alex’s life and the struggles she faced since she was born and how everyone around her dealt with her sickness. This book was later made into a TV movie that helped to spread a greater awareness of the disease.

MORE: Newly released book, Just Breathe: Adults Living With Cystic Fibrosis, provides depth and beauty to the story of CF.

Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.