Facing Cystic Fibrosis
Author: Yelizaveta Sher
Publisher:
Published: 2020
Total Pages:
ISBN-13: 9781951166113
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Cystic Fibrosis
Author: Stephanie Duggins Davis
Publisher: Springer Nature
Published: 2020-05-21
Total Pages: 525
ISBN-13: 3030423824
DOWNLOAD EBOOK →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.
A Life Course Perspective on Health Trajectories and Transitions
Author: Claudine Burton-Jeangros
Publisher: Springer
Published: 2015-08-11
Total Pages: 213
ISBN-13: 331920484X
DOWNLOAD EBOOK →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.
Facts about Cystic Fibrosis
The Power of Two
Author: Isabel Stenzel Byrnes
Publisher: University of Missouri Press
Published: 2007-10-01
Total Pages: 312
ISBN-13: 0826266045
DOWNLOAD EBOOK →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.
Breath from Salt
Author: Bijal P. Trivedi
Publisher: BenBella Books
Published: 2020-09-08
Total Pages: 744
ISBN-13: 1948836629
DOWNLOAD EBOOK →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 Book of Rosy
Author: Rosayra Pablo Cruz
Publisher: HarperCollins
Published: 2020-06-02
Total Pages: 215
ISBN-13: 0062941941
DOWNLOAD EBOOK →“Offers hope in the face of desperate odds” – ELLE Magazine, ELLE’s Most Anticipated Books of Summer 2020 “[D]isturbing and unforgettable memoir…This wrenching story brings to vivid life the plight of the many families separated at the U.S.-Mexico border.” – Publisher’s Weekly, STARRED REVIEW “[The] haunting and eloquent…narrative of a Guatemalan woman's desperate search for a better life." -Kirkus, STARRED Review PEOPLE Magazine Best Books of Summer 2020 TIME Magazine Best Books of Summer 2020 PARADE Best Books of Summer 2020 Compelling and urgently important, The Book of Rosy is the unforgettable story of one brave mother and her fight to save her family. When Rosayra “Rosy” Pablo Cruz made the agonizing decision to seek asylum in the United States with two of her children, she knew the journey would be arduous, dangerous, and quite possibly deadly. But she had no choice: violence—from gangs, from crime, from spiraling chaos—was making daily life hell. Rosy knew her family’s one chance at survival was to flee Guatemala and go north. After a brutal journey that left them dehydrated, exhausted, and nearly starved, Rosy and her two little boys arrived at the Arizona border. Almost immediately they were seized and forcibly separated by government officials under the Department of Homeland Security’s new “zero tolerance” policy. To her horror Rosy discovered that her flight to safety had only just begun. In The Book of Rosy, with an unprecedented level of sharp detail and soulful intimacy, Rosy tells her story, aided by Julie Schwietert Collazo, founder of Immigrant Families Together, the grassroots organization that reunites mothers and children. She reveals the cruelty of the detention facilities, the excruciating pain of feeling her children ripped from her arms, the abiding faith that staved off despair—and the enduring friendship with Julie, which helped her navigate the darkness and the bottomless Orwellian bureaucracy. A gripping account of the human cost of inhumane policies, The Book of Rosy is also a paean to the unbreakable will of people united by true love, a sense of justice, and hope for a better future.
Cystic Fibrosis
Author: David M. Orenstein
Publisher: Lippincott Williams & Wilkins
Published: 2012-03-28
Total Pages: 788
ISBN-13: 1451154380
DOWNLOAD EBOOK →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.”
The Power of Two
Author: Isabel Stenzel Byrnes
Publisher: University of Missouri Press
Published: 2014-10-14
Total Pages: 361
ISBN-13: 0826273424
DOWNLOAD EBOOK →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. 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 of twins who share this life-threatening disease through adulthood.Isabel and Anabel 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 is an honest and gripping portrayal of the daily struggle associated with long-term hospitalization, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, the Stenzel twins endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But 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 turning point in their lives: “We have an old life—one of growing up with chronic illness—and anew life—one of opportunities and gifts we have never imagined before.” In this memoir, they pay tribute to the people who shaped their experience. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.
Alex
Author: Frank Deford
Publisher: Open Road Media
Published: 2015-02-24
Total Pages: 115
ISBN-13: 1504007336
DOWNLOAD EBOOK →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.
