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This is the inspiring account of Andy Lipman's life with cystic fibrosis and the candid story of a young man finding his way in the world, despite big challenges. Cystic fibrosis affects seventy thousand people worldwide. In the United States, thirty thousand people live with cystic fibrosis and each year several hundred die as a result. When I was born in the early seventies, life expectancy for those with CF was in the teens. It is Andy's declaration that everyone, including medical professionals who told him he could not live past the age of 25, was wrong. This is the story of a competitive person with a life-threatening disease-the story of a person with hopes and dreams, just like everyone else, who must also deal with extraordinary circumstances. Andy writes about how he has dealt with depression for most of his life and the negative effects it has had on his family and loved ones. His purpose in writing this is to raise awareness about cystic fibrosis and to help fund cystic fibrosis research.
Cystic Fibrosis is a fatal genetic condition that affects people physically and mentally every day. This book describes the disease and the genetic causes behind it, follows researchers on their path to scientific discovery, identifies people who have excelled despite the condition, and tracks the latest treatments and research aimed at helping those with the condition. Sidebars highlight medical breakthroughs and the people who made them.
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.
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.
Presents the causes, symptoms, and treatments of cystic fibrosis.
Now in a fully updated 9th Edition, Kendig's Disorders of the Respiratory Tract in Children, by Drs. Robert Wilmott, Andrew Bush, Robin Deterding, and Felix Ratjen, continues to provide authoritative, evidence-based information to residents, fellows, and practitioners in this wide-ranging specialty. Bringing key knowledge from global experts together in one easy-to-understand volume, it covers everything from the latest basic science and its relevance to today’s clinical issues, to improving patient outcomes for the common and rare respiratory problems found in newborns and children worldwide. Uses succinct, straightforward text, numerous tables and figures, summaries at the end of each chapter, and more than 500 full-color images to convey key information in an easy-to-digest manner. Contains new chapters reflecting expanding knowledge on the respiratory complications of Down syndrome and other genetic disorders, modern molecular therapies for cystic fibrosis and asthma, and pulmonary embolism and thromboembolic disease. Features a new templated format with more descriptive headings and bulleted text for quick reference and navigation. Covers today’s key issues, including the genetic basis of respiratory disease, new and emerging respiratory infections, interstitial lung diseases in infants and young children, technology and diagnostic techniques for pulmonary function tests, emerging lung infections, and new therapies for cystic fibrosis and asthma. Provides up-to-date instruction on important procedures, such as bronchoscopy and pulmonary function testing. Highlights the knowledge and expertise of three new editors, as well as more than 100 world authorities in the fields of pediatrics, pulmonology, neurology, microbiology, cardiology, physiology, diagnostic imaging, critical care, otolaryngology, allergy, and surgery.
A gritty, romantic modern fairy tale from the author of Break and Gone, Gone, Gone. Be careful what you believe in. Rudy’s life is flipped upside-down when his family moves to a remote island in a last attempt to save his sick younger brother. With nothing to do but worry, Rudy sinks deeper and deeper into loneliness and lies awake at night listening to the screams of the ocean beneath his family’s rickety house. Then he meets Diana, who makes him wonder what he even knows about love, and Teeth, who makes him question what he knows about anything. Rudy can’t remember the last time he felt so connected to someone, but being friends with Teeth is more than a little bit complicated. He soon learns that Teeth has terrible secrets. Violent secrets. Secrets that will force Rudy to choose between his own happiness and his brother’s life.

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