Facts about Cystic Fibrosis
Author :
Publisher :
Page : 6 pages
File Size : 10,55 MB
Release : 1995
Category : Cystic fibrosis
ISBN :
Cystic Fibrosis
Author : Marcus A. Mall
Publisher : European Respiratory Society
Page : 342 pages
File Size : 17,94 MB
Release : 2014-06-01
Category : Medical
ISBN : 1849840512
Book Description
Cystic fibrosis (CF) is one of the most common fatal hereditary diseases. The discovery of the cystic fibrosis transmembrane conductance regulator (CFTR) gene 25 years ago set the stage for unraveling the pathogenesis of CF lung disease, continuous refinement of symptomatic treatments and the development of mutation-specific therapies, which are now becoming available for a subgroup of patients. This ERS Monograph provides an update on all aspects of CF lung disease, from infancy to adulthood, including current concepts on disease process, improvements in early diagnosis and monitoring, therapeutic approaches, and patient care. The book highlights important recent developments and discusses the next steps that will be required for further improvement of the life expectancy and quality of life of CF patients. It will be an essential reference for basic and clinical scientists and all members of the CF team.
Coughing It All Up
Author : Luke Peters
Publisher :
Page : 446 pages
File Size : 25,82 MB
Release : 2020-12
Category : Biography & Autobiography
ISBN : 9781838306823
Book Description
Born in 1972, Luke Peters was diagnosed with the chronic and life-limiting condition cystic fibrosis. His parents were told it was likely that he would spend much of his childhood in hospital and would be lucky to reach his teenage years. Almost 50 years later, Luke is still alive, still fending off the impacts of this disease with one hand whilst grabbing life and all that it has to offer with the other. With a steadfast resolve to fulfil his ambitions and a determination not to let cystic fibrosis define him, Luke has filled his life with achievements that few would have predicted possible at his birth. With two academic degrees under his belt, successful careers both in aviation and as a lawyer, time spent living both in France and the United States as well as travels to over forty countries worldwide, a pilot's licence and two healthy children, Luke has always aimed to take as much out of life as possible before the ravages of cystic fibrosis take the life out of him. From amazing highs to the very depths of sadness and on more than one occasion when he has almost lost his life, Luke's book describes in vivid detail the twists and turns that he has endured during his life so far. Now facing the proposition of a double lung transplant, which could save his life but could also end it, Luke describes the events that have brought him to this point, how he has dealt with each of them and how he has continuously strived to live his life to be just the same as everyone else, whilst accepting that it is okay to be different. 'Coughing It All Up' is a testament to the power of a positive outlook, and will have you smiling, laughing and crying in equal measure. A share of the proceeds from the book will go to CF-related charities.
Salt in My Soul
Author : Mallory Smith
Publisher : Random House
Page : 336 pages
File Size : 25,43 MB
Release : 2019-03-12
Category : Biography & Autobiography
ISBN : 1984855433
Book Description
The diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five—the inspiration for the original streaming documentary Salt in My Soul “An exquisitely nuanced chronicle of a terrified but hopeful young woman whose life was beginning and ending, all at once.”—Los Angeles Times Diagnosed with cystic fibrosis at the age of three, Mallory Smith grew up to be a determined, talented young woman who inspired others even as she privately raged against her illness. Despite the daily challenges of endless medical treatments and a deep understanding that she’d never lead a normal life, Mallory was determined to “Live Happy,” a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love. For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness. What emerges is a powerful and inspiring portrait of a brave young woman and blossoming writer who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived—and a call for all of us to embrace our own lives as fully as possible.
Breath from Salt
Author : Bijal P. Trivedi
Publisher : BenBella Books
Page : 744 pages
File Size : 32,19 MB
Release : 2020-09-08
Category : Medical
ISBN : 1948836629
Book Description
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.
Chronic Liver Failure
Author : Pere Ginès
Publisher : Springer Science & Business Media
Page : 583 pages
File Size : 41,94 MB
Release : 2010-11-03
Category : Medical
ISBN : 1607618664
Book Description
Chronic liver failure is a frequent condition in clinical practice that encompasses all manifestations of patients with end-stage liver diseases. Chronic liver failure is a multiorgan syndrome that affects the liver, kidneys, brain, heart, lungs, adrenal glands, and vascular, coagulation, and immune systems. Chronic Liver Failure: Mechanisms and Management covers for the first time all aspects of chronic liver failure in a single book, from pathogenesis to current management. Each chapter is written by a worldwide known expert in their area and all provide the latest state-of-the-art knowledge. This volume is specifically designed to provide answers to clinical questions to all doctors dealing with patients with liver diseases, not only clinical gastroenterologists and hepatologists, but also to internists, nephrologists, intensive care physicians, and transplant surgeons.
A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases
Author : Institute of Medicine
Publisher : National Academies Press
Page : 200 pages
File Size : 46,94 MB
Release : 2011-08-26
Category : Medical
ISBN : 0309212197
Book Description
Chronic diseases are common and costly, yet they are also among the most preventable health problems. Comprehensive and accurate disease surveillance systems are needed to implement successful efforts which will reduce the burden of chronic diseases on the U.S. population. A number of sources of surveillance data-including population surveys, cohort studies, disease registries, administrative health data, and vital statistics-contribute critical information about chronic disease. But no central surveillance system provides the information needed to analyze how chronic disease impacts the U.S. population, to identify public health priorities, or to track the progress of preventive efforts. A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases outlines a conceptual framework for building a national chronic disease surveillance system focused primarily on cardiovascular and chronic lung diseases. This system should be capable of providing data on disparities in incidence and prevalence of the diseases by race, ethnicity, socioeconomic status, and geographic region, along with data on disease risk factors, clinical care delivery, and functional health outcomes. This coordinated surveillance system is needed to integrate and expand existing information across the multiple levels of decision making in order to generate actionable, timely knowledge for a range of stakeholders at the local, state or regional, and national levels. The recommendations presented in A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases focus on data collection, resource allocation, monitoring activities, and implementation. The report also recommends that systems evolve along with new knowledge about emerging risk factors, advancing technologies, and new understanding of the basis for disease. This report will inform decision-making among federal health agencies, especially the Department of Health and Human Services; public health and clinical practitioners; non-governmental organizations; and policy makers, among others.
Muddy Thursday
Author : Darla Garvey
Publisher :
Page : 338 pages
File Size : 21,42 MB
Release : 2021-10-13
Category :
ISBN : 9780578869834
Book Description
There is nothing remarkable about finding a penny on the sidewalk or bumping into an old friend on the street, but what if you stumble upon a lifeless child lying in the grass on a cold, dark night? What happens then? In Muddy Thursday, Darla Garvey tells us exactly what happens, because it happened to her. And that child? He was her son. Darla Garvey would have preferred to write a murder mystery, an action hero series, or even a folktale. Anything but a memoir that centers on the most traumatic event of her life - and that is the sudden, mysterious death of her twelve-year old son, Ray. But this is the story that chose her. Ray lived with cystic fibrosis (CF), a genetic life-threatening disease that primarily affects the lungs and digestive system. His daily care was complicated and time-consuming, but between respiratory treatments Ray lived as if he didn't have cystic fibrosis. He was equal parts charming, feisty, thoughtful, stubborn, and incredibly funny. In fact, nothing brought Ray more joy than making people laugh. So it seems especially cruel that a young boy who brought laughter to this world, and one who fought every day to slow the progression of his disease, would be blindsided by something else that shockingly took his life. Ray's younger sister, Martha was also diagnosed with cystic fibrosis. Not only did Martha lose her only sibling, she lost her best friend, her partner in crime, and the only other person she knew who had CF. After her brother's death, Martha was left to deal with complications from her illness without the one person who would have understood her fight and would have championed for her to hang in there. Muddy Thursday chronicles Martha's courageous journey with, and without, her brother. With her sense of humor, Garvey skillfully provides levity just when the reader needs it the most. And while Muddy Thursday is certainly a tragic, heartbreaking story, it is also a testament to one family's strength, courage and hope. Most of all, Muddy Thursday is a love story.
Recipes for the Specific Carbohydrate Diet
Author : Raman Prasad
Publisher : Quarto Publishing Group USA
Page : 227 pages
File Size : 46,63 MB
Release : 2008-02-01
Category : Cooking
ISBN : 1616738456
Book Description
“This clever book is not just a great supplement to the Specific Carbohydrate Diet . . . but will also ensure the whole family enjoys a healthy . . . yummy diet.” —Mik Aidt, Founder and co-webmaster, www.scdiet.org The Specific Carbohydrate Diet (SCD) is a strict grain-free, lactose-free, and sucrose-free dietary regimen intended for those suffering from Crohn’s disease and ulcerative colitis (both forms of IBD), celiac disease, IBS, cystic fibrosis, and autism. For those suffering from gastrointestinal illnesses, this book offers a method for easing symptoms and pain, and ultimately regaining health. Recipes for the Specific Carbohydrate Diet(TM) includes a diverse and delicious collection of 150 SCD-friendly recipes and more than eighty dairy-free recipes. The easy-to-make and culturally diverse recipes featured in the book include breakfast dishes, appetizers, main dishes, and desserts, such as Hazelnut-Vanilla Pancakes, Olive Sandwich Bread, Chicken Satay, Roasted Bass with Parsley Butter, Thin Crust Pizza, Gretel’s Gingerbread Cookies, and Mango Ice Cream. Full-color photos will inspire you to get cooking again. In addition, personal anecdotes accompany each section of this book. Find out more at www.scdrecipe.com/cookbook/. “Raman Prasad shares his personal experience in this comprehensive cookbook. It is a wonderful contribution and tribute to Elaine Gottschall and it will be an invaluable resource for those suffering with gastrointestinal issues. He provides a comprehensive overview of the science behind the diet, menus, holiday traditions, and gourmet recipes. This book will give families the confidence they need to heal.” —Pam Ferro, R.N., Founder of The Gottschall Autism Center
Heritable Human Genome Editing
Author : The Royal Society
Publisher : National Academies Press
Page : 239 pages
File Size : 23,8 MB
Release : 2021-01-16
Category : Medical
ISBN : 0309671132
Book Description
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
