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HomeResources and SupportA-Z resourcesCystic fibrosis

Cystic fibrosis

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Below you will find a variety of resources to help you better understand, cope with and/or support someone who has cystic fibrosis.

 Books

CF and you: a guide for adolescents 

Ottawa, ON: Carleton UP, 1996.

This book offers sensible advice on dealing with CF clinic staff, coping with school physiotherapy, and discussing CF with friends and family. In response to concerns voiced by adolescents with CF, this revised edition tackles issues such as sexuality and personal relationships unique to people with CF. Also included is a section dealing with the transition to adult CF clinic care.

Cystic Fibrosis / Abramovitz, Melissa. 

San Diego: Lucent Books, 2003.

Explores the history, symptoms, diagnosis, and treatment of cystic fibrosis, reviews ongoing research, and discusses how to live with the incurable genetic disease that is often called "65 Roses."

Cystic fibrosis: the ultimate teen guide / Apel, Melanie Ann. 

Lanham, MD: The Scarecrow Press, Inc. 2006.

Based on interviews with people living with CF and their family members. Covers all aspects of the disease such as the day to day dealings with the illness, diagnoses procedures, daily therapies, and stories of CF patients now in their 30's and 40's.

Little brave ones: for children who battle cystic fibrosis / Lux, Carrie. 

Charleston, SC: Booksurge, 2005.

This picture book tells the story of one day in the life of a little girl fighting Cystic Fibrosis. It was written in order to help these small but mighty few find a sense of commonality and see fun photos of other kids who are just like themselves.

Living with Cystic Fibrosis / Gray, Susan H. 

Chanhassen, MN: The Child's World, 2002.

Introduces readers to the disease of cystic fibrosis, its causes, how it affects the body, and what it's like to live with the disease.

Mallory's 65 roses / Smith, Diane Shader. 

This is an engaging story of Mallory, a creative and energetic little girl afflicted with cystic fibrosis (CF), an inherited lung disease. She explains her condition and its ramifications in her own words, painting a picture accessible to children and poignant to adults.

Miguel and Sarah: close friends and cystic fibrosis / Dowell, Andrea C. 

Minneapolis, MN: Children's Hospitals and Clinics - Minneapolis, 1999.

Miguel explains what he has learned about Cystic Fibrosis from his friend Sarah, who has the disease. Appropriate for children aged 5-14.

The official parent's sourcebook on cystic fibrosis 

San Diego, CA: ICON Health Publications, 2004.

A reference manual for self-directed patient research. Includes web-site listings not likely found using the popular web directories.

Parenting children with health issues: essential tools, tips, and tactics for raising kids with chronic illness, medical conditions and special healthcare needs / Cline, Foster. 

Golden, CO: Love & Logic Press, 2007.

Offers parents of children with chronic health issues practical strategies and suggestions to help them cope with their child's condition and the constant physical and emotional challenges they face. 

Taking Cystic Fibrosis to school / Henry, Cynthia S. 

Valley Park, MO: Jayjo books, 2000.

Designed to help kids better understand their classmates with cystic fibrosis, this brightly illustrated picture book also educates families, teachers, school nurses, parents, and caregivers. Appropriate for ages: 5-10 years.

Understanding cystic fibrosis / deLoache, Shawn; Renfrew, Ruth.

New York: Medikidz USA, Inc., 2018.

In graphic novel format, the Medikidz, superheroes from the planet Mediland, help the reader and Ella understand cystic fibrosis.

 Understanding cystic fibrosis / Hopkin, Karen.

Jackson: University Press of Mississippi, 1998.

Understanding Cystic Fibrosis charts the progress that has been made in identifying the mutations that cause CF and in understanding how these genetic errors cause a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections.

Understanding nutrition in cystic fibrosis / Hogg, James.

New York: Medikidz Inc., 2018.

In graphic novel format, the Medikidz, superheroes from the planet Mediland, help Justin understand why nutrition is important when you have cystic fibrosis.

Websites 

  • Cystic Fibrosis (CF) – About Kids Health 
  • Cystic Fibrosis Canada 
  • Cystic Fibrosis Quebec

  • Cystic Fibrosis – MedlinePlus from the US National Library of Medicine 

  • What is Cystic Fibrosis?  NIH - National Heart, Lung and Blood Institute

  • Kids Health - Information for Parents, Teens and Kids from the Nemours Foundation

  • Cystic Fibrosis Foundation
  • Cystic Fibrosis and Your Baby – March of Dimes

  • Cystic Fibrosis Parent Handbook – Seattle’s Children’s Hospital

 Apps

CF MedCare

Available in multiple languages

Free

Last updated March 2019

Available from Google Play

 

Fact sheets

Lung problems and cystic fibrosis

Stomach problems and cystic fibrosis

 Local contacts

Cystic Fibrosis Clinic - CHEO 

401 Smyth Road

Ottawa, ON K1H 8L1

Fax: 613-738-4865

Nurse Coordinator: 613-737-7600 ext. 2214

Physician referral is required with confirmed diagnosis of cystic fibrosis.

 

Cystic Fibrosis Canada

Northern and Eastern Office

416-485-9149 ext. 306

pmclaughlin@cysticfibrosis.ca

Disclaimer

These resources are for educational purposes only. If you have any questions, ask your health-care provider.

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