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New CF Books

Thursday, May 3, 2012

{EDIT: Angie mentioned that her family really likes the book Cadberry's Letters, which can be purchased off Amazon.  This books is about a little bunny who learns about her Cystic Fibrosis.  Thanks for the suggestion, Angie!!}



I have written about CF books in the past but I have found two more that I thought other CF families might like to know are out there.  The truth is these are books that can't easily be found on the internet and certainly cannot be found in Barnes and Noble.

 
Who I Am is probably my favorite CF book that I've found so far.


It's about a little girl who describes who she is.  It describes her as having CF but it doesn't just describe her as having CF.  I think it's an adorably illustrated, well written and very balanced book that my kids will use for years.


This book is free and given out by Pulmozyme.  I contacted their customer service line and was able to get a book sent to me.  Another way to get this book would be to contact the CF Clinic's Pulmozyme representative.


Another good book I picked up at our CF Clinic's CF day is called, What's up with Justin? Medikids Explain Nutrition in Kids with Cystic Fibrosis.  It is put out by the pharmaceutical company Abbott.  I was able to grab a copy from our local Abbott representative.


What's Up With Justin? is geared more towards the middle school crowd but Oliver has enjoyed having us read it to him.


This book, set as a comic book, talks about enzymes, mucus and why CFers need to eat a high fat diet to stay well.  To my delight, there is another book in this series called, Whats Up with Beth: Medikidz explain Cystic Fibrosis.  A copy can be purchased here


Oliver's favorite part is the "brain thingy robot" and about the mucus.  The truth is this book will be really wonderful for teaching Oliver why Bennett is encouraged to eat all the types of foods we do and will discourage Oliver to eat and for teaching Bennett why taking his enzymes are so important.


I am sure there are more CF books specifically for children out there.  But, at this point, I only know of these three books for kids.  I have tried to get my hands on two copies of each book, if at all possible.  I keep one good copy of each book tucked away so that I can bring out a nice clean copy when and if I ever need to use the book to teach Bennett/Oliver/their friends about CF.  But I have placed the other copy of these books along with the children's other general books in order to normalize Cystic Fibrosis and to allow the children to read these books on their own and at their choosing.


As I posted about previously, Mallory's 65 Roses is also a sweet book that talks about a little girls' experience with her "65 Roses".  Mallory's 65 Roses was made by a pharmaceutical company but I am not sure how to get extra copies for free.  Here are cheap copies on Amazon.


I think having books to teach the boys about CF is really important so I am very thankful to have access to them.  I hope more will be printed in the future, especially ones that talk more about the specifics behind how the mutated CF gene.  But for now, I have decided to bring our books to Clinic with us so I can begin connecting Bennett's real life experience with that which is in the book, such as what an X-ray is or how doctors help us.

I'd love to know of other books out there if anybody has any to recommend!  And if someone is having trouble getting a copy of a book, I'd be happy to help track a copy down!

4 Responses to “New CF Books”

  1. Breck, Thank you for sharing these! I totally am going to try to get a copy of Who I Am! We have only have one book right now. It's Cadberry's Letters (which we got off of Amazon). It's pretty good. It works well for my 4 almost 5 year old, but is a bit over Finn's head right now.

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  2. While looking at Cadberry's Letters, amazon recommended one called "Taking Cystic Fibrosis to School"

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  3. Do you still have the number for the Pulmozyme customer service line you contacted for "Who I am"? I can't seem to find a number that has worked, but I'm really interested in getting this book!

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    1. Melissa,
      Contact me at breckgamel @ yahoo.com and I will give you the name and number of our representative! I also called 1-888-PLMZYME (756-9963) and asked to speak with a representative. She was able to send me one right out. Either way, I'll help you get a copy! Email me!
      Breck

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