Keeping Families at the Center of Health Care
Twenty-one-year-old Laura Rothenberg has always tried to live a normal life–even with lungs that betray her, and a sober awareness that she may not live to see her next birthday. Like most people born with cystic fibrosis, the chronic disease that affects lungs and other organs, she struggles to come to grips with a life… More Breathing For A Living: A Memoir
Momma bunny explains CF to her young bunny, Cadberry. Cadberry learns why he takes his medicine, uses his vest. Written by a Mom to help explain CF to her young daughter, this is a wonderful story for young children.
Written by a woman who has two sisters with CF, this is a colorful, encouraging book for children, encouraging them to do whatever they want, follow their dreams and not let cf hold them back.
Booklet providing overview of CF, and its affects on a child. Information on nutrition, exercise, clearing airways provided. School issues addressed include how cf can interfere with school, maintaining school to home communication, sample modifications. Also available to download – Cystic Fibrosis In The Classroom
This guide offers easy-to-understand explanations, advice, and management options for patients or parents of patients with cystic fibrosis. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. As one reviewer said, this book “is the only complete answer book for… More Cystic Fibrosis: A Guide For Patient And Family (3rd Edition)
What is the experience of a child with a life-threatening illness? It can be so hard for parents, family, and friends to understand, because the experience of serious illness is so hard to articulate. With her co-author, Chynna Bracha Levin, Claire describes with precision, honesty, and humor what it’s like to live with a serious… More Every Breath I Take
Explaining to friends about Cystic Fibrosis can be very tricky, especially if you are just learning. Join Charlie mouse and Timmy while they build a friendship and Charlie learns about cystic fibrosis.
This coloring book/ journal is designed for children with CF to assist them in understanding their feelings, dealing with their experiences. A facilitator’s guide is included.
Photos of children of all ages, taking their enzymes, using their nebulizers and therapy vests, and at play. General information about cystic fibrosis, presented in a very positive manner.
This is an imaginative book written by a young boy with Cystic Fibrosis. The story talks about some of his fears, and his wishes for the world to be free of illnesses like Cancer, CF and AIDS.
A young girl, home from the hospital with a new scar, is told a story of the “Scardust Fairy” by her father. Written by a woman with Cystic Fibrosis, who has several scars and felt self conscious about them, to help other children feel better about theirs.
Jessie talks about having CF. Appropriate for elementary age…. Includes CF quiz for kids at the end, and ten tips for teachers.
Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, Isabel and Anabel endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But they tell how, in the face of innumerable setbacks, their deep-seated dependence on each other allowed them to survive long enough to reap the… More The Power Of Two – A Twin Triumph over Cystic Fibrosis
An ordinary family is faced with an extraordinary challenge, a child with cystic fibrosis. This is their story, rich and moving, as they laugh and cry and learn and grow. Their love, faith, and commitment to each other carry them through battles with depression, anger, despair, and the ravages of the disease as they join… More The Spirit Of Lo: An Ordinary Family’s Extraordinary Journey
Jennifer Hale was diagnosed in 1974 with Cystic Fibrosis (CF), an incurable genetic disease. At that time, children with CF had a life expectancy of just 15 years. But Jennifer had a special passion for life, and her parents – Donna and Evan Michael Codell – had the determination and fighting spirit to enrich and… More There Are No Alligators in Heaven!: A family’s perspectives on surviving the unrelenting savagery of Cystic Fibrosis
Tube feeding can be a healthy decision for individuals with cystic fibrosis. The decision is never easy. This multi-part video features nutritionists, as well as seven families and patients who have made this decision. NG and G tube set ups are profiled. Available in DVD format.
Lilly has a pretty cool life. This story shows that she has to do a few extra things when she gets up each day to stay healthy, because she also has cystic fibrosis.