I want to compile a list of great resources to about Cystic Fibrosis for a young Adult audience. If you know of any others please let us know in the comments and I will update this list.
1. Can’t Eat, Can’t Breathe, and Other ways Cystic Fibrosis has F#$%*d Me – “Do you like stories of triumph over adversity? You should watch RUDY–it’s really good. But if you like stories of broken homes and broken toilets, I’ve got the book for you. It’s called Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. It’s about how Cystic Fibrosis has f#$%*d me. After all, there’s nothing funnier than laughing at someone else’s misfortune.”
2. Ghosts – “Catrina and her family are moving to the coast of Northern California because her little sister, Maya, is sick. Cat isn’t happy about leaving her friends for Bahía de la Luna, but Maya has cystic fibrosis and will benefit from the cool, salty air that blows in from the sea. As the girls explore their new home, a neighbor lets them in on a secret: There are ghosts in Bahía de la Luna. Maya is determined to meet one, but Cat wants nothing to do with them. As the time of year when ghosts reunite with their loved ones approaches, Cat must figure out how to put aside her fears for her sister’s sake – and her own.”
3. Living with Cystic Fibrosis
4. Managing Issues for Adolescents with Cystic Fibrosis – “The healthy adolescent will encounter major changes in biological and psychosocial domains. The adolescent period can be greatly affected by a chronic illness. Cystic fibrosis is a terminal illness that can significantly affect an adolescent’s biological, mental and psychosocial health. This paper discusses general issues to consider when managing an adolescent with a chronic medical condition, and specifically how cystic fibrosis may impact upon puberty, body image, risk-taking behaviours, mental health, independence, nonadherence, reproductive health, transition, lung transplantation, and end of life care.”
5. Cystic Fibrosis: The Ultimate Teen Guide – Cystic Fibrosis: The Ultimate Teen Guide leaves no aspect of this disease untold. Based on a series of interviews with young people with CF and their family members, the day-to-day dealings of life as a cystic fibrosis patient are described. Some of the topics covered include a description of the illness; a comprehensive discussion of who gets the disease and why; an explanation of the procedures involved in diagnosing CF; coverage of the arduous daily therapies involved in maintaining the life of a person with CF; and the challenges of dealing with CF-related diabetes.
6. Breathing Bravely: Giving Voice to Cystic Fibrosis – “All proceeds to benefit the nonprofit organization Breathe Bravely. Breathing Bravely: Giving Voice to Cystic Fibrosis is the passionate story of Ashley Ballou-Bonnema and her journey through the seasons of Cystic Fibrosis. Within a single cycle of seasons, Ashley’s journey and experience are witness to life’s joys and heartaches while breathlessly rooted in gratitude. From the grip of Winter’s harsh wrath to the abundant life filled blossoms of the Spring, Ashley’s perseverance, voice, and vulnerability resonate deeply within each of our own journeys.”
7. Imperfect Perfection: A Cystic Fibrosis Journey – “Jonathan Sacker was born with Cystic Fibrosis, a genetic disease which most effects the respiratory and digestive systems. “Imperfect Perfection” is a journey through the difficult and tumultuous battles that have resulted from this disease.
With a comical and “laugh-at-yourself” style, Jonathan shares his life in an uplifting and positive manner with hope that each reader will find perfection within their own imperfection.”
8. The Power of Two: A Twin Triumph over Cystic Fibrosis – For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for Isabel Stenzel Byrnes and Anabel Stenzel, twin girls with the disease, what began as a family’s stubborn determination grew into a miracle.
Adult Edition – Coming Soon