47 A Life With Cystic Fibrosis

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47 / a Life with Cystic Fibrosis

Author : Simon Wiffen
Publisher :
ISBN 13 :
Total Pages : 104 pages
Book Rating : 4.6/5 (566 download)

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Book Synopsis 47 / a Life with Cystic Fibrosis by : Simon Wiffen

Download or read book 47 / a Life with Cystic Fibrosis written by Simon Wiffen and published by . This book was released on 2020-06-24 with total page 104 pages. Available in PDF, EPUB and Kindle. Book excerpt: 47 / A Life With Cystic Fibrosis is a book of beautiful, intimate portraits exploring the reality of living with cystic fibrosis. Each subject offers an insight into their attitudes to life and their condition up to and beyond the median predicted survival rate of 47. Cystic fibrosis (CF) is a genetic condition that affects around 10,400 people in the UK. It affects the lungs, digestive system and other organs in the body. While CF requires a complex and lifelong combination of medication, treatments and physiotherapy there is currently no cure. It can be an incredibly isolating illness as due to cross infection, people with CF aren't allowed to meet in person. It's a life-limiting condition and the average life expectancy is currently 47 years old. With 47 / A Life With Cystic Fibrosis, Simon Wiffen set out to study how this number affects the attitudes and opinions of people diagnosed with CF at various stages of their journey. Over the course of a year he visited each person in this book, shot their portrait and chatted to them about their life, their attitude to the condition and their hopes and dreams for the future. He was fascinated to know whether these changed as people approached (and passed) 47. Each portrait is shot in the same style, with the same lighting and presented in black and white. This approach was chosen to remove the distraction and focus on the individual in the picture and their unique experience. CF is a complex, cruel and often misunderstood condition that requires lifelong care while not always having visible symptoms. As such it can be difficult for people to fully understand the severity of the condition. Life with CF requires a daily routine of medicine, treatments and physiotherapy along with a progressive loss of lung function that can often result in a need for organ transplants. It brings a combination of lifelong challenges that can produce incredibly strong and resilient personalities who have to face the realities of mortality every day. Anne Shinkwin, Director of Fundraising at The Cystic Fibrosis Trust said: "Simon's intimate portraits give a unique insight into the lives of some of the 10,400 people in the UK living with cystic fibrosis (CF). This book beautifully captures multiple voices and reveals the reality of living with a condition that shortens life. Although there is no cure for CF, advances in research are helping people to live longer. However, as these stories attest, CF remains a daily challenge." 47 / A Life With Cystic Fibrosis was originally published in paperback to 5 star reviews following a hugely successful Kickstarter campaign that smashed its target in just 8 hours. The book has been featured on BBC1 and in the Daily Express. In 2020 Simon was awarded the Unsung Hero Award at the AP Awards in recognition of his work on the project. 25% of profits from this book will go to support the incredible work that the Cystic Fibrosis Trust do every day to support those affected by CF and to help work towards a cure. Thank you. You can read more about this project at https://www.simonwiffenphotography.co.uk/projects/47-a-life-with-cystic-fibrosis/

The CF Warrior Project

Author : Andy C. Lipman
Publisher : Booklogix
ISBN 13 : 9781610059558
Total Pages : 216 pages
Book Rating : 4.0/5 (595 download)

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Book Synopsis The CF Warrior Project by : Andy C. Lipman

Download or read book The CF Warrior Project written by Andy C. Lipman and published by Booklogix. This book was released on 2019-05-15 with total page 216 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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

Breath from Salt

Author : Bijal P. Trivedi
Publisher : BenBella Books
ISBN 13 : 1948836629
Total Pages : 744 pages
Book Rating : 4.9/5 (488 download)

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Book Synopsis Breath from Salt by : Bijal P. Trivedi

Download or read book Breath from Salt written by Bijal P. Trivedi and published by BenBella Books. This book was released on 2020-09-08 with total page 744 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

The Power of Two

Author : Isabel Stenzel Byrnes
Publisher : University of Missouri Press
ISBN 13 : 0826266045
Total Pages : 312 pages
Book Rating : 4.8/5 (262 download)

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Book Synopsis The Power of Two by : Isabel Stenzel Byrnes

Download or read book The Power of Two written by Isabel Stenzel Byrnes and published by University of Missouri Press. This book was released on 2007-10-01 with total page 312 pages. Available in PDF, EPUB and Kindle. Book excerpt: For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for twin girls with the disease, what began as a family’s stubborn determination grew into a miracle. The tragedy of CF has been touchingly recounted in such books as Frank Deford’s Alex: The Life of a Child, but The Power of Two is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their lifelong struggle to pursue normal lives with cystic fibrosis while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins’ bicultural heritage—Japanese and German—influenced the way they coped with these challenges. 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 benefits of the miraculous lung transplants that marked a crossroads in their lives: “We have an old life—one of growing up with chronic illness—and a new life—one of opportunities and gifts we have never imagined before.” In this memoir, they pay tribute to the people who shaped their experience. The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. It conveys an important message to both popular and professional readers as it addresses key psychosocial issues in chronic illness throughout the sufferer’s lifespan and illuminates the human side of advances in biotechnology. Even as gene therapy and stem cell research increase the chances for eradicating CF, this stirring account portrays its effects on one family that refused to give up. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.

Cystic Fibrosis and DNA Tests

Author :
Publisher : Office of Technology Assessment
ISBN 13 :
Total Pages : 312 pages
Book Rating : 4.3/5 (121 download)

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Book Synopsis Cystic Fibrosis and DNA Tests by :

Download or read book Cystic Fibrosis and DNA Tests written by and published by Office of Technology Assessment. This book was released on 1992 with total page 312 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Hodson and Geddes' Cystic Fibrosis

Author : Andrew Bush
Publisher : CRC Press
ISBN 13 : 1444180010
Total Pages : 675 pages
Book Rating : 4.4/5 (441 download)

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Book Synopsis Hodson and Geddes' Cystic Fibrosis by : Andrew Bush

Download or read book Hodson and Geddes' Cystic Fibrosis written by Andrew Bush and published by CRC Press. This book was released on 2015-07-24 with total page 675 pages. Available in PDF, EPUB and Kindle. Book excerpt: Hodson and Geddes' Cystic Fibrosis provides everything the respiratory clinician, pulmonologist or health professional treating patients needs in a single manageable volume. This international and authoritative work brings together current knowledge and has become established in previous editions as a leading reference in the field. This fourth edition includes a wealth of new information, figures, useful videos, and a companion eBook. The basic science that underlies the disease and its progression is outlined in detail and put into a clinical context. Diagnostic and clinical aspects are covered in depth, as well as promising advances such as gene therapies and other novel molecular based treatments. Patient monitoring and the importance of multidisciplinary care are also emphasized. This edition: Features accessible sections reflecting the multidisciplinary nature of the cystic fibrosis care team Contains a chapter written by patients and families about their experiences with the disease Includes expanded coverage of clinical areas, including chapters covering sleep, lung mechanics and the work of breathing, upper airway disease, insulin deficiency and diabetes, bone disease, and sexual and reproductive issues Discusses management both in the hospital and at home Includes a new section on monitoring and discusses the use of databases to improve patient care Covers monitoring in different age groups, exercise testing and the outcomes of clinical trials in these areas Includes chapters devoted to nursing, physiotherapy, psychology, and palliative and spiritual care Throughout, the emphasis is on providing an up-to-date and balanced review of both the clinical and basic science aspects of the subject and reflecting the multidisciplinary nature of the cystic fibrosis care team.

A Life Course Perspective on Health Trajectories and Transitions

Author : Claudine Burton-Jeangros
Publisher : Springer
ISBN 13 : 331920484X
Total Pages : 215 pages
Book Rating : 4.3/5 (192 download)

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Book Synopsis A Life Course Perspective on Health Trajectories and Transitions by : Claudine Burton-Jeangros

Download or read book A Life Course Perspective on Health Trajectories and Transitions written by Claudine Burton-Jeangros and published by Springer. This book was released on 2015-08-11 with total page 215 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book examines health trajectories and health transitions at different stages of the life course, including childhood, adulthood and later life. It provides findings that assess the role of biological and social transitions on health status over time. The essays examine a wide range of health issues, including the consequences of military service on body mass index, childhood obesity and cardiovascular health, socio-economic inequalities in preventive health care use, depression and anxiety during the child rearing period, health trajectories and transitions in people with cystic fibrosis and oral health over the life course. The book addresses theoretical, empirical and methodological issues as well as examines different national contexts, which help to identify factors of vulnerability and potential resources that support resilience available for specific groups and/or populations. Health reflects the ability of individuals to adapt to their social environment. This book analyzes health as a dynamic experience. It examines how different aspects of individual health unfold over time as a result of aging but also in relation to changing socioeconomic conditions. It also offers readers potential insights into public policies that affect the health status of a population.

Cystic fibrosis and DNA tests : implications of carrier screening.

Author :
Publisher : DIANE Publishing
ISBN 13 : 1428921192
Total Pages : 303 pages
Book Rating : 4.4/5 (289 download)

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Book Synopsis Cystic fibrosis and DNA tests : implications of carrier screening. by :

Download or read book Cystic fibrosis and DNA tests : implications of carrier screening. written by and published by DIANE Publishing. This book was released on with total page 303 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Living on Borrowed Time

Author : Debbie Pitts
Publisher : debbie pitts
ISBN 13 : 9781425945749
Total Pages : 200 pages
Book Rating : 4.9/5 (457 download)

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Book Synopsis Living on Borrowed Time by : Debbie Pitts

Download or read book Living on Borrowed Time written by Debbie Pitts and published by debbie pitts. This book was released on 2007 with total page 200 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Not a Wasted Breath

Author : LaRecea Tabor Gibbs
Publisher : Tate Publishing
ISBN 13 : 1616639350
Total Pages : 282 pages
Book Rating : 4.6/5 (166 download)

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Book Synopsis Not a Wasted Breath by : LaRecea Tabor Gibbs

Download or read book Not a Wasted Breath written by LaRecea Tabor Gibbs and published by Tate Publishing. This book was released on 2010-12-14 with total page 282 pages. Available in PDF, EPUB and Kindle. Book excerpt: 'Sis, the worst thing CF [cystic fibrosis] can do is kill me. It can't stop me from living.' Todd Gibbs spoke those words once to his sister and he proved that statement true time and time again. Though cystic fibrosis did kill him five days after his thirty-first birthday, the living he did showed that he had won the battle, even if CF eventually won the war. Not a Wasted Breath is not just a story about living with a fatal disease or waiting for a transplant. That was only a part of Todd's life. He never allowed his illness to rule his life, even in the face of over eighty hospitalizations. This is truly a story about how others perceived Todd, how they were affected by his presence in their lives, and how Todd viewed himself and his existence. In a poignant compilation of thoughts, memories, articles, and journal entries, LaRecea Gibbs, Todd's mother, creates a touching tableau of a life well spent that will inspire anyone to overcome personal obstacles through faith, determination, courage, and most of all, humor. Join mother and author LaRecea Gibbs in an inspiring biography which shows that though Todd's life was short, he never wasted a single breath. This Book is an inspiration to all readers in appreciating the gift of life. The account is thorough, has depth of development, is authentic, and puts us inside the people involved. Not a Wasted Breath enables readers to travel along emotionally. As a result, we count our own blessings. John Hagaman, Professor of English, Western Kentucky University, Director of WKU Writing Project.

It’S Been a Good Life, Dad

Author : Jerry E. Hendon
Publisher : iUniverse
ISBN 13 : 1491778385
Total Pages : 436 pages
Book Rating : 4.4/5 (917 download)

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Book Synopsis It’S Been a Good Life, Dad by : Jerry E. Hendon

Download or read book It’S Been a Good Life, Dad written by Jerry E. Hendon and published by iUniverse. This book was released on 2016-01-07 with total page 436 pages. Available in PDF, EPUB and Kindle. Book excerpt: Its Been a Good Life, Dad!My Sons Struggle with Cystic Fibrosis portrays a young manKevin Hendonwho lived his eighteen years with cystic fibrosis ever present. The author, Jerry E. Hendon, tells the story of his sons life in the first part of this biography. He presents the diseases harsh truths and the severe limitsand of medicines ability to respond to the diseases challenges. With equal clarity, though, he reveals the energy and determination his son showed in the face of his diagnosis. In the second part of Its Been a Good Life, Dad!, Kevins poetry takes center stage. He shares his feelings of isolation and frustration. He ruminates on love, lust, and romance. He expresses his observations about friends and school. He reflects on the place of religion and family in his life. The final two sections of the book sample the recollections of people who knew Kevin and share the abiding influences of Kevins spirit in the wider community of those his life has touched. Whether you have cystic fibrosis or know someone who lives with this disease, you might find yourself turning the pages of this portrayal and feeling the temptation to echo the authors despair when he said, What a miserable life! But in the face of this disease and in response to such tugs to give in to despair, Kevins responds, Oh, no. Its been a good life . Its been a good life.

Alex

Author : Frank Deford
Publisher : Open Road Media
ISBN 13 : 1504007336
Total Pages : 115 pages
Book Rating : 4.5/5 (4 download)

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Book Synopsis Alex by : Frank Deford

Download or read book Alex written by Frank Deford and published by Open Road Media. This book was released on 2015-02-24 with total page 115 pages. Available in PDF, EPUB and Kindle. Book excerpt: A father’s moving memoir of cystic fibrosis “captures a brave child’s legacy as well as the continuing fight against the genetic disease” (The New York Times). In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal. Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girl—going to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight. Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughter’s birth. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal. Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying “I love you” so her brother could listen to her whenever he wanted, and as heartrending as the young girl’s tragic, dawning realization of her own very tenuous mortality, and her parents’ difficulty in trying to explain why. Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.

Cystic Fibrosis, Third Edition

Author : Margaret Hodson
Publisher : CRC Press
ISBN 13 : 1444113690
Total Pages : 523 pages
Book Rating : 4.4/5 (441 download)

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Book Synopsis Cystic Fibrosis, Third Edition by : Margaret Hodson

Download or read book Cystic Fibrosis, Third Edition written by Margaret Hodson and published by CRC Press. This book was released on 2012-12-11 with total page 523 pages. Available in PDF, EPUB and Kindle. Book excerpt: This international and authoritative work, which brings together current knowledge in the field of cystic fibrosis, has become established in previous editions as a leading reference in the field. The third edition continues to provide everything that the clinician or allied health professional treating patients with cystic fibrosis will need in a single manageable volume. Thoroughly revised and updated throughout, it reflects the significant advances that have been made in the field since the second edition published in 2000. Cystic Fibrosis evaluates in detail the basic science that underlies the disease and its progression, putting it into a clinical context. Diagnostic and clinical aspects are covered in depth, as are monitoring the condition and the importance of multi-disciplinary care, reflected in the sections into which the new edition has been sub-divided to improve accessibility. Future developments, including novel therapies, are covered in a concluding section. The clinical areas have been much expanded, with the introduction of separate chapters covering sleep, lung mechanics and the work of breathing, upper airway disease, insulin deficiency and diabetes, bone disease, and sexual and reproductive issues. A new section on monitoring discusses the use of databases to improve patient care, and covers monitoring in different age groups, exercise testing and the outcomes of clinical trials in these areas. Separate chapters are devoted to paramedical issues, including nursing, physiotherapy, psychology, and palliative and spiritual care. Throughout, the emphasis is on providing an up-to-date and balanced review of both the clinical and basic sciences aspects of the subject, and to reflect the multi-disciplinary nature of the cystic fibrosis care team. Drawing on the expertise of a team of international specialists from a variety of backgrounds, the third edition of Cystic Fibrosiswill continue to find a broad readership among respiratory physicians, paediatricians, specialist nurses and other health professionals working with patients with cystic fibrosis.

Alex, the Life of a Child

Author : Frank Deford
Publisher :
ISBN 13 :
Total Pages : 142 pages
Book Rating : 4.:/5 (422 download)

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Book Synopsis Alex, the Life of a Child by : Frank Deford

Download or read book Alex, the Life of a Child written by Frank Deford and published by . This book was released on 1991 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Integrated Palliative Care of Respiratory Disease

Author : Stephen Bourke
Publisher : Springer Science & Business Media
ISBN 13 : 1447122305
Total Pages : 244 pages
Book Rating : 4.4/5 (471 download)

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Book Synopsis Integrated Palliative Care of Respiratory Disease by : Stephen Bourke

Download or read book Integrated Palliative Care of Respiratory Disease written by Stephen Bourke and published by Springer Science & Business Media. This book was released on 2012-12-03 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book brings together the knowledge, skills and attitudes of specialists in both Respiratory Medicine and Palliative Medicine to focus on the palliative care of patients with respiratory diseases. It deals not only with end of life care but also with symptom control and supportive care to improve the quality of life of those living their lives with advanced progressive lung disease.

Cystic Fibrosis

Author : Julian Allen
Publisher : CRC Press
ISBN 13 : 1439801827
Total Pages : 546 pages
Book Rating : 4.4/5 (398 download)

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Book Synopsis Cystic Fibrosis by : Julian Allen

Download or read book Cystic Fibrosis written by Julian Allen and published by CRC Press. This book was released on 2016-04-19 with total page 546 pages. Available in PDF, EPUB and Kindle. Book excerpt: The median age of survival for those with cystic fibrosis has risen considerably in recent years. This text thoroughly examines the developments and breakthroughs which have led to this improvement in life expectancy. With a focus on the latest discoveries in the diagnosis and treatment of the disease, this book provides a comprehensive overview of

Cystic Fibrosis

Author : Marcus A. Mall
Publisher : European Respiratory Society
ISBN 13 : 1849840512
Total Pages : 342 pages
Book Rating : 4.8/5 (498 download)

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Book Synopsis Cystic Fibrosis by : Marcus A. Mall

Download or read book Cystic Fibrosis written by Marcus A. Mall and published by European Respiratory Society. This book was released on 2014-06-01 with total page 342 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.