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This one-of-a-kind 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 everyone living with the disease. It is an indispensable resource for families of children with CF, adolescent and adult patients, and physicians, nurses, respiratory therapists, and social workers involved in the care of CF patients.”
Cystic fibrosis, a genetic disorder in children and young adults, is a multisystemic disease that mainly affects the lungs. Advances and improvements in the diagnosis and management of this condition have led to increased overall and symptom-free survival in cystic fibrosis patients. This book examines recent advances in the field and presents an evidence-based approach to the management of cystic fibrosis.
"Andy's book will provide hope for those who so desperately need it. These stories of strength and determination are inspiration to keep fighting in our own lives." --Celine Dion "These are tales of warriors who have beaten the odds by making their dreams come true. These are stories that will give you hope. And by buying this book, you will bring us closer to a cure. That is my dream." --Lewis Black "After spending time with cystic fibrosis warriors throughout the country, I've quickly realized they are the toughest and most resilient people I have ever met. The outlook CF warriors have on life is one that everyone should strive to have." --Colton Underwood "These are the stories of CF warriors who refused to succumb to a distressful prognosis, and instead thrived through the power of belief." --Megan Fox
Describes the challenges of living with cystic fibrosis, as well as a description of the illness, and an explanation of procedures for diagnosis and therapy.
Recommended by Bill Gates and included in GatesNotes "Elaborating on the science as well as the business behind the fight against cystic fibrosis, Trivedi captures the emotions of the families, doctors, and scientists involved in the clinical trials and their 'weeping with joy' as new drugs are approved, and shows how cystic fibrosis, once a 'death sentence,' became, for many, a manageable condition. This is a rewarding and challenging work." —Publishers Weekly Cystic fibrosis was once a mysterious disease that killed infants and children. Now it could be the key to healing millions with genetic diseases of every type—from Alzheimer's and Parkinson's to diabetes and sickle cell anemia. In 1974, Joey O'Donnell was born with strange symptoms. His insatiable appetite, incessant vomiting, and a relentless cough—which shook his tiny, fragile body and made it difficult to draw breath—confounded doctors and caused his parents agonizing, sleepless nights. After six sickly months, his salty skin provided the critical clue: he was one of thousands of Americans with cystic fibrosis, an inherited lung disorder that would most likely kill him before his first birthday. The gene and mutation responsible for CF were found in 1989—discoveries that promised to lead to a cure for kids like Joey. But treatments unexpectedly failed and CF was deemed incurable. It was only after the Cystic Fibrosis Foundation, a grassroots organization founded by parents, formed an unprecedented partnership with a fledgling biotech company that transformative leaps in drug development were harnessed to produce groundbreaking new treatments: pills that could fix the crippled protein at the root of this deadly disease. From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene's celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it. Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
This book provides a comprehensive overview of the multisystem disease, cystic fibrosis, for both pediatric and adult patients. Written by experts in the field, the text outlines the progressive nature of CF as well as the impact of this autosomal recessive disease on the respiratory, gastrointestinal, endocrine, rheumatologic, and renal systems, as well as the patient’s mental health. The book begins with a chapter describing the history of cystic fibrosis and how the face of this life-shortening disease has changed over the past several decades. The following chapters elucidate the pathophysiology of how cystic fibrosis impacts each organ system. Current management and therapeutics are detailed with step-by-step guidelines for clinicians. This book is unique in that it highlights the entire person, not just the respiratory system, with detailed inclusion of the patient perspectives throughout, informing practice standards and considerations. This is an ideal guide for pediatric and adult physicians who care for patients with cystic fibrosis, as well as respiratory therapists, physical therapists, nurses, nutritionists, and pharmacists who care for these patients.
Liam couldn't be happier. He's off to kindergarten, where he's going to make a million new friends and learn a billion new things! Mom is worried about Liam going to school, but Liam knows he'll be fine. He has his oxygen mask and his medication for lunch and snack time. Plus, he knows he's strong as a tree. You see, Liam has a great big tree in his backyard. Mom says trees need lots of oxygen from the air, just like his lungs. And they need food from the ground, just like his tummy. Sometimes, their tree gets sick, sicker than the other trees. That's when Mom and Liam give it special food and extra love, and it grows big and strong again. School is everything Liam hoped it would be. And when Liam needs his oxygen mask or medication, his friends know that Liam just needs a little extra help to be strong like the others. Until one winter's day, when Liam catches a cold. Inspired by a real boy and his first year of school while battling cystic fibrosis, read how Liam's young friends, with compassion and support, remind Liam of his own strength during the isolating time of illness.
NATIONAL BESTSELLER The New York Times bestselling author of Being Mortal and Complications examines, in riveting accounts of medical failure and triumph, how success is achieved in a complex and risk-filled profession The struggle to perform well is universal: each one of us faces fatigue, limited resources, and imperfect abilities in whatever we do. But nowhere is this drive to do better more important than in medicine, where lives are on the line with every decision. In this book, Atul Gawande explores how doctors strive to close the gap between best intentions and best performance in the face of obstacles that sometimes seem insurmountable. Gawande's gripping stories of diligence, ingenuity, and what it means to do right by people take us to battlefield surgical tents in Iraq, to labor and delivery rooms in Boston, to a polio outbreak in India, and to malpractice courtrooms around the country. He discusses the ethical dilemmas of doctors' participation in lethal injections, examines the influence of money on modern medicine, and recounts the astoundingly contentious history of hand washing. And as in all his writing, Gawande gives us an inside look at his own life as a practicing surgeon, offering a searingly honest firsthand account of work in a field where mistakes are both unavoidable and unthinkable. At once unflinching and compassionate, Better is an exhilarating journey narrated by "arguably the best nonfiction doctor-writer around" (Salon). Gawande's investigation into medical professionals and how they progress from merely good to great provides rare insight into the elements of success, illuminating every area of human endeavor.