Recommended Books on Cystic Fibrosis
Living with Cystic Fibrosis Melissa was born on February 18, 1987, in Charlotte, North Carolina. Shortly after the critical age of three months, she was diagnosed with cystic fibrosis, back in a time when not many babies/children lived past the age of ten. She lived in Charlotte until she was four years old, when her family moved to Roswell, Georgia. There she attended school and graduated from Centennial High School in 2005. She went on to Gordon College in Barnesville, Georgia, and is currently attending CPCC in Charlotte, North Carolina. Today, she still continues to battle CF daily. Having lost two friends to CF, Melissa is more determined than ever to beat this diagnosis and help others too. Her family and friends mean the world to her, and as you read her life story you will see what challenges and obstacles she had to face and is still facing today just to try to live a normal life. Every year with the help from family and friends, Melissa raises thousands of dollars for the Cystic Fibrosis Foundation called Bowl for Breath. Part of the proceeds from this book will go to the CF Foundation in Atlanta, Georgia.
Cystic Fibrosis: Everything You Need To Know (Your Personal Health) Cystic fibrosis afflicts approximately 30,000 Americans. The average age of survival has been steadily increasing, but not quickly enough: a child born with cystic fibrosis today can only expect to live 35 to 40 years.
In this valuable new addition to the Your Personal Health series, Dr. Wayne Kepron offers a comprehensive look at the disease that afflicts so many young people. Topics include: - Symptoms of cystic fibrosis - Making a diagnosis - Complications of the disease - Treatments (including lung transplants) - Techniques and precautions in lung care - Transition into adulthood - Prospects for gene therapy - End-of-life issues Using diagrams, charts and case studies, Cystic Fibrosis is designed for patients, their families, and caregivers. It is both a quick reference guide and a tool for in-depth study.
Living With Cystic Fibrosis (Living Well Chronic Conditions) 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.
Cystic Fibrosis: A Guide for Patient and Family Univ. of Pittsburgh, PA. Text is designed specifically for patients with cystic fibrosis and their families. Explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. Includes new material on carrier testing, infection control, and more. Previous edition: c1997. Softcover.
Little Brave Ones: For Children Who Battle Cystic Fibrosis See a day in the life of a preschooler with CF.
Coughing the Distance - from Paris to Istanbul with Cystic Fibrosis Walter is an inspiring 42 year old male with Cystic Fibrosis. His lung function is well below 50% of what it should be, but he has decided to cycle from Paris to Istanbul. He brings with him a team of friends consisting of a film-guy Lucas, a journo called Heather, mate David is the medic and Troy is the mechanic who will also drive the support vehicle.
Will they make Istanbul in one piece? Read about their adventures as they battle with infections and breakdowns.
People with CF currently live to be about 35 years of age, when Walter was diagnosed in 1975 people lived to be about 20. People born with CF today may well live much longer, who knows what research will bring!
The Stones Applaud: How Cystic Fibrosis Shaped My Childhood Teresa Mullin was diagnosed with cystic fibrosis at four years of age, but it was not until she was nine that she learned most children with the disease were not expected to live to adulthood. What had been a nuisance soon became a force that molded her childhood, youth, and future. In The Stones Applaud, Mullin writes of absences from school, serving as a poster child, frequent hospitalizations, medical treatments, and most painful the isolation that came with cystic fibrosis, an inherited condition that damages the lungs and affects the digestive system. With dry humor and sharp insights, Mullin describes her battles with the disease, teachers, fellow students, and even medical professionals who tried to hold her back from experiencing life. Alternately funny, frank, poignant, and gripping, The Stones Applaud reveals the talented young writer's fierce determination to live, thrive, and persevere. Whether writing about the joy of being accepted to prep school and Harvard University, the tragedies of others deaths, or the pain of a broken friendship, Mullin never resorts to sentimentality or courts pity. The result is a powerful self-portrait of a young woman who bravely faced death while living life, who fought for every breath and every experience, and who challenges others to carry on the fight for dignity and independence for those with chronic illness. Before she died, Mullin visited Ireland and witnessed cold Atlantic waves beat against the cliffs. Inevitably, the cliffs will not withstand the unrelenting waves, but still they persevere and only the stones applaud. Mullin selected that metaphor from a poem by Gerald Dawe as the title of her memoir. She saw herself and others impacted by cystic fibrosis as the stone cliffs, standing resolute and strong in the face of a battle they suspect they will never win.
Psychosocial Aspects of Cystic Fibrosis (Arnold) Rutgers Univ., Camden, NJ. Discusses the psychological impact of cystic fibrosis on individuals with this illness, and their families. Considers new approaches to issues including adherence to therapy, communication within families, staff burnout, and education and counseling. For clinicians and researchers.
Understanding Cystic Fibrosis (Understanding Health and Sickness Series) Since the discovery of the CF gene in 1989, scientists have learned a great deal about the biology of this disease which strikes one child in every 3,300 births. With the gene pinpointed, scientists are now working on ways to replace it and are developing better tests for earlier diagnosis. Understanding CF charts the progress that has been made in a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections
David's Promise: A Young Man's Struggle with Cystic Fibrosis What would it be like to navigate this life under the shadow of a deadly disease? How would you cope, both physically and psychologically? Approximately 30,000 people in our country live with the devastating illness, cystic fibrosis, and one in twenty Caucasians are carriers of its gene. Many among us are affected by CF, but few really know much about it.
David's Promise delivers an in-depth examination of a young man's life-long confrontation with cystic fibrosis. Through the fictional main character of David, the reader is given a deeply personal chance to experience love's ultimate triumph over illness. The story explores all the complexities of David's life, and as each layer unfolds, the reader begins to look beyond David's medical diagnosis and into his heart. The young man is a teacher with a pregnant wife and a whole slew of struggles, including the implications of genetic testing, the question of abortion, and denial of medical insurance coverage in this country. This novel does not pull any punches concerning the stark realities of cystic fibrosis, yet it was written to offer hope and understanding about an often hopeless and misunderstood disease. AUTHOR BIO: Kathy Howell resides in southern New Mexico with Jack, her husband of thirty years. She is the mother of two adult sons, one who lives with cystic fibrosis. Kathy has also worked in the arena of Early Childhood Education for a large portion of her life. When not writing, Kathy enjoys swimming, tennis and hiking. She received her B.A. and M.A.T. from Western New Mexico University. This is Kathy's first novel.
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