The Power of Two

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Author :
Publisher : University of Missouri Press
ISBN 13 : 0826273424
Total Pages : 361 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 2014-10-14 with total page 361 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 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.

Triumph Over Cystic Fibrosis

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Author :
Publisher : Independently Published
ISBN 13 :
Total Pages : 0 pages
Book Rating : 4.3/5 (924 download)

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Book Synopsis Triumph Over Cystic Fibrosis by : Annette Purseley

Download or read book Triumph Over Cystic Fibrosis written by Annette Purseley and published by Independently Published. This book was released on 2023-04-24 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: The awfulness of CF has been touchingly described in such books as Annette Purseley: The purpose of this book, Triumph Over Cystic Fibrosis, is to show the symbiotic relationship between people who share this life-threatening disease into adulthood. This book describes their struggle throughout their lives to live normal lives despite having cystic fibrosis and grappling with the realization that they will die young. Their individual life story 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 significance of a support network to continuing survival. It also reflects the physical and emotional challenges of a particularly aggressive form of CF. Different people had to endure the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations before scientists discovered the genetic mutation that causes CF. However, despite numerous setbacks, their deep dependence on one another enabled them to survive long enough to benefit from the miraculous lung transplants that marked a turning point in their lives: We have two lives-one of growing up with a chronic illness and the other of new opportunities and blessings we could never have imagined. In this journal, they honor individuals who formed their experiences. The power of perseverance and, ultimately, hope can be learned a lot from these two remarkable sisters.

The CF Warrior Project

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Author :
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 of Hope) Ashton and Lola's Triumph Over Cystic Fibrosis

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Author :
Publisher : Independently Published
ISBN 13 :
Total Pages : 0 pages
Book Rating : 4.8/5 (741 download)

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Book Synopsis (Breath of Hope) Ashton and Lola's Triumph Over Cystic Fibrosis by : Scotty M Taylor

Download or read book (Breath of Hope) Ashton and Lola's Triumph Over Cystic Fibrosis written by Scotty M Taylor and published by Independently Published. This book was released on 2024-01-05 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: (Breath of hope) Ashton and Lola Triumph Over Cystic Fibrosis: A Tale of Resilience, Medical Breakthroughs, and the Power of the Human Spirit Dive into the inspirational narrative chronicling the remarkable journey of Ashton and Lola Ferguson, two siblings born into a world shadowed by the challenges of cystic fibrosis. Marcella Lee's heartfelt exploration takes readers on an emotive odyssey through triumphs, resilience, and the transformative power of hope amidst adversity. Inside this compelling Book: Unveil the captivating resilience of Ashton and Lola as they navigate the complexities of cystic fibrosis and transcend the limitations imposed by their diagnosis. ● Explore the pivotal role played by groundbreaking research and innovative medications, notably Trikafta, in reshaping the landscape for individuals grappling with cystic fibrosis. ● Witness Jennifer Gell's unwavering advocacy within the CF community and her pivotal role in fostering awareness, support, and empowerment for affected individuals and families. ● Delve into the broader impact of inspirational stories within the CF community, fostering awareness, spreading empathy, and instilling hope for a brighter future. Breath of Resilience is a poignant testament to the human spirit's indomitable capacity to rise above challenges and breathe life into tomorrow. Get your copy now !! and be inspired by the triumph of resilience, the power of advocacy, and the promise of a future brimming with hope and possibilities.

David's Promise

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Author :
Publisher : Virtualbookworm Publishing
ISBN 13 : 1589398491
Total Pages : 228 pages
Book Rating : 4.5/5 (893 download)

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Book Synopsis David's Promise by : Kathy Sykes Howell

Download or read book David's Promise written by Kathy Sykes Howell and published by Virtualbookworm Publishing. This book was released on 2006 with total page 228 pages. Available in PDF, EPUB and Kindle. Book excerpt: What would it be like to navigate this life under the shadow of a deadly disease? How would you cope, both physically and psychologically? Approximately 30,000 people in our country live with the devastating illness, cystic fibrosis, and one in twenty Caucasians are carriers of its gene. Many among us are affected by CF, but few really know much about it. "David's Promise" delivers an in-depth examination of a young man's life-long confrontation with cystic fibrosis. Through the fictional main character of David, the reader is given a deeply personal chance to experience love's ultimate triumph over illness. The story explores all the complexities of David's life, and as each layer unfolds, the reader begins to look beyond David's medical diagnosis and into his heart. The young man is a teacher with a pregnant wife and a whole slew of struggles, including the implications of genetic testing, the question of abortion, and denial of medical insurance coverage in this country. This novel does not pull any punches concerning the stark realities of cystic fibrosis, yet it was written to offer hope and understanding about an often hopeless and misunderstood disease.

Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me

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Author :
Publisher : Createspace Independent Publishing Platform
ISBN 13 : 9781492739500
Total Pages : 0 pages
Book Rating : 4.7/5 (395 download)

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Book Synopsis Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me by : Jay Gironimi

Download or read book Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me written by Jay Gironimi and published by Createspace Independent Publishing Platform. This book was released on 2013-09-15 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Jay Gironimi (rhymes with astronomy) is a man who can't eat and can't breathe. Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me is not an inspirational story of triumph over adversity. But if you'd like to read a series of reflections on poop and mucus, it just might be the book for you.

Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me

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Author :
Publisher :
ISBN 13 : 9781310692178
Total Pages : pages
Book Rating : 4.6/5 (921 download)

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Book Synopsis Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me by : Jay Gironimi

Download or read book Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me written by Jay Gironimi and published by . This book was released on 2013 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: Do you like stories of triumph over adversity? You should watch RUDY--it's really good. But if you like stories of broken homes and broken toilets, I've got the book for you. It's called Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. It's about how Cystic Fibrosis has f#$%*d me. After all, there's nothing funnier than laughing at someone else's misfortune

Diary of a CF Kid

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Author :
Publisher : Independently Published
ISBN 13 :
Total Pages : 225 pages
Book Rating : 4.7/5 (288 download)

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Book Synopsis Diary of a CF Kid by : Tim Sweeney

Download or read book Diary of a CF Kid written by Tim Sweeney and published by Independently Published. This book was released on 2021-04-19 with total page 225 pages. Available in PDF, EPUB and Kindle. Book excerpt: Are you a CF kid? You're not alone! When Tim Sweeney was (much) younger, he wished he had a book like this to help him navigate the ups and downs of having cystic fibrosis. Tim was born with cystic fibrosis at a time when there wasn't a lot known about it. Throughout Tim's life, he has faced challenge after challenge and never gave up. As a result, Tim has learned all of the tools he uses to be a CF Warrior everyday. Tools such as exercise, good eating habits, compliance with breathing treatments and medications, and having the right mindset. Just like a superhero, Tim relies on his family, friends, and doctors to help, but he also relies on himself. In Diary of a CF Kid, Tim teaches the life lessons he's learned, such as trust, self-esteem, integrity, courage, and many others, to help be a CF Warrior who is winning daily battles. Tim's mission in life is to live with health and happiness. Living with CF has many challenges and it helps to be inspired by someone who has seen every stage of CF including 3 life saving surgeries (and even managed to run a marathon less than year after his double lung transplant). Tim has been a personal trainer for over 20 years with a wife and 3 boys. Let's face it, a lot of kids find reading too boring and not as exciting as an iPad. Diary of a CF Kid is told in the entertaining Diary of a Wimpy Kid style with funny sketches and stories that will make you laugh, engage, be inspired, and learn. Tim's diary also brings to life important topics for a CF kid. Each diary entry focuses on a new value with examples that include historical figures such as Helen Keller, the Wright Brothers, Gandhi, Nelson Mandela, and many others. Tim also uses his own experiences to teach valuable lessons that have made a huge impact on his life. Learning from such real life heroes will inspire CF kids to live a life with health and happiness. This book is for a CF Kid. It is also for the parents of a CF kid who want to know how their kid experiences the world. How do CF kids perceive CF? What are the fears and hopes of a CF kid? What are some of the values that are important for a CF kid to practice daily? Perfect as a bedtime story, neatly divided into small sections, Diary of a CF Kid is a one of kind book for CF Kids.

Breath from Salt

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Author :
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.

Walter and the Mucous Monsters

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Author :
Publisher : Coughing the Distance
ISBN 13 : 9781442185012
Total Pages : 40 pages
Book Rating : 4.1/5 (85 download)

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Book Synopsis Walter and the Mucous Monsters by : Katherine Hitch

Download or read book Walter and the Mucous Monsters written by Katherine Hitch and published by Coughing the Distance. This book was released on 2009-07-20 with total page 40 pages. Available in PDF, EPUB and Kindle. Book excerpt: Walter van Praag cycled from Paris to Istanbul with a small support team, including young film maker Lucas Li to raise awareness of cystic fibrosis Their journey started on a rainy morning in Paris. It was Saturday July 28, 2007, and through the Paris traffic they left for Istanbul with 4395 kilometers of riding ahead of them. They travelled through France, Germany, Switzerland, Austria, Hungary, Croatia, Serbia, Romania and Bulgaria before reaching their goal of Istanbul in Turkey.

Alex

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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.

Love Like Salt

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Publisher : Virago
ISBN 13 : 0349007802
Total Pages : 247 pages
Book Rating : 4.3/5 (49 download)

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Book Synopsis Love Like Salt by : Helen Stevenson

Download or read book Love Like Salt written by Helen Stevenson and published by Virago. This book was released on 2016-03-03 with total page 247 pages. Available in PDF, EPUB and Kindle. Book excerpt: CHOSEN BY MAGGIE O'FARRELL IN THE GUARDIAN AS ONE OF HER BEST BOOKS OF THE YEAR 'It's a slice of a life . . . a complex, intelligent, beautiful, thoughtful, rather lyrical book' -Cathy Rentzenbrink, author of The Last Act of Love 'A moving treatise on inheritance, not just of a disease like cystic fibrosis, but of our attitudes to living and loving, our sense of cultural and familial landscape, and how these intangibles pass down through generations. Stevenson picks apart her life like a strand of DNA to uncover just how we become the sum of our parts' Daily Telegraph 'A beautiful memoir . . . [Stevenson] is a novelist and a translator and her memoir is about translation in the larger sense. Translating the world is what we all do but she reminds us that one can hope - with a mind as intricately well read and original as hers - to translate misfortune; to absorb and see beyond it . . . Stevenson makes of poetry, fiction and philosophy a protective shawl for her story . . . Although intense she has a carefree wit' Kate Kellaway, Observer 'Love Like Salt is a human triumph ... Ultimately, Love Like Salt follows in the hallowed footsteps of Helen MacDonald's brilliant H is for Hawk or Cathy Rentzenbrink's The Last Act of Love. These are not misery memoirs but reminders that life comes in all shades - that in the darkest moments, beauty and humour can be found' Francesca Brown, Stylist 'Did Clara taste salty when I kissed her? She did. She tasted of mermaids, of the sea.' Love Like Salt is a deeply affecting memoir, beautifully and intelligently written. It is about mothers and daughters, music and illness, genes and inheritance, writing and story-telling. It is about creating joy from the hand you've been dealt and following its lead - in this case to rural France, where the author and her family lived for seven years. And back again. 'I had always written, and until the birth of Clara I wrote for a living. Once I knew the Cystic Fibrosis gene had unfolded itself in our daughter's body, like a paper flower meeting water, I felt that to write, even if I had had time, or been able, would have been to squander a kind of power which was needed for tending and nurturing. Every moment became a moment in which I protected my baby. Some of it I did in secret, like a madwoman muttering spells. I thought of her as a candle, cupping my hand around her. A beautifully written memoir, in the vein of H is for Hawk and The Last Act of Love, about motherhood, music and living the best life you can, even in the shadow of illness.

Beyond Breathing

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Author :
Publisher : iUniverse
ISBN 13 : 1935278657
Total Pages : 149 pages
Book Rating : 4.9/5 (352 download)

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Book Synopsis Beyond Breathing by : Margarete Cassalina

Download or read book Beyond Breathing written by Margarete Cassalina and published by iUniverse. This book was released on 2009-03 with total page 149 pages. Available in PDF, EPUB and Kindle. Book excerpt: Beyond Breathing is a story of a mother's loss of her 13 year old daughter, Jena, to Cystic Fibrosis, a fatal genetic disease. Her journey takes you from unfathomable heartache to love and understanding of life's realities. Through her journey she learns that life lessons come from her children and the beauty of living and the power of love. In the span of one year she learns to go from depression and dependency to inner strength and the realization that love never ends and that there are no coincidences. That she is beyond just breathing.

The Theater of War

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Author :
Publisher : Vintage
ISBN 13 : 0307949729
Total Pages : 306 pages
Book Rating : 4.3/5 (79 download)

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Book Synopsis The Theater of War by : Bryan Doerries

Download or read book The Theater of War written by Bryan Doerries and published by Vintage. This book was released on 2016-08-23 with total page 306 pages. Available in PDF, EPUB and Kindle. Book excerpt: For years theater director Bryan Doerries has been producing ancient Greek tragedies for a wide range of at-risk people in society. His is the personal and deeply passionate story of a life devoted to reclaiming the timeless power of an ancient artistic tradition to comfort the afflicted. Doerries leads an innovative public health project—Theater of War—that produces ancient dramas for current and returned soldiers, people in recovery from alcohol and substance abuse, tornado and hurricane survivors, and more. Tracing a path that links the personal to the artistic to the social and back again, Doerries shows us how suffering and healing are part of a timeless process in which dialogue and empathy are inextricably linked. The originality and generosity of Doerries’s work is startling, and The Theater of War—wholly unsentimental, but intensely felt and emotionally engaging—is a humane, knowledgeable, and accessible book that will both inspire and enlighten.

Second Wind

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Publisher : Springer
ISBN 13 : 1137011505
Total Pages : 471 pages
Book Rating : 4.1/5 (37 download)

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Book Synopsis Second Wind by : M. Festle

Download or read book Second Wind written by M. Festle and published by Springer. This book was released on 2012-02-14 with total page 471 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book uses both oral and conventional historical methods to describe and analyze the history of lung transplantation in the US. While drawing on accounts from doctors and other specialists, it primarily focuses on the experiences of patients and explores themes of uncertainty, timing, identity, coping, and quality of life.

The Language of Life

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Publisher : Profile Books
ISBN 13 : 1847652093
Total Pages : 332 pages
Book Rating : 4.8/5 (476 download)

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Book Synopsis The Language of Life by : Francis Collins

Download or read book The Language of Life written by Francis Collins and published by Profile Books. This book was released on 2010-12-09 with total page 332 pages. Available in PDF, EPUB and Kindle. Book excerpt: We are in the midst of a medical revolution: in just a few years, we will be able to have our complete DNA sequenced at an affordable cost. Analysing the content of our genomes will allow a powerful estimate of our future risks of illness - from cystic fibrosis and Huntington's disease, to cancer and diabetes - which will help us devise our own personalised blueprint of preventive medicine. This will have enormous implications on everything from our day-to-day choices like diet and exercise, to childbearing and health insurance - and it may even challenge what we thought we knew about our ethnic histories. Combining cutting-edge scientific research with practical advice, Francis Collins examines this remarkable phenomenon, which will transform healthcare worldwide. We now know that the language spoken by our DNA is the language of life itself, and in this important book Collins shows how reading that language will help save lives.

Baby-Making

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Author :
Publisher : OUP Oxford
ISBN 13 : 0191628131
Total Pages : 303 pages
Book Rating : 4.1/5 (916 download)

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Book Synopsis Baby-Making by : Bart Fauser

Download or read book Baby-Making written by Bart Fauser and published by OUP Oxford. This book was released on 2011-10-27 with total page 303 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the developing world, the choices available to couples for fertility treatments in the 21st century are wider than ever before. This is a time when most types of infertility can be treated by modern 'test-tube' methods, yet reproduction itself has become inextricably bound with social and political trends - declining birth rates, delayed first pregnancy, childbirth beyond the age of 40, the state funding of infertility treatment - fertility treatment is a hot topic, high on the agenda of politicians in their efforts to reverse declining national fertility rates. The range of new technologies is expansive, from embryo selection by genetic analysis to egg donation in the over-forties and cryopreservation. Today, the 'assistance' of conception with treatments such as IVF reflects a life-choice whose context is immediately social, cultural, personal, and political. Arguing that these new technologies allow the 'design' of babies in a way which is far beyond the spontaneity of nature, Bart Fauser and Paul Devroey describe the new treatments, consider what they can do, and look at how far they have come in shaping our everyday lives. Considering the wider implications of fertility treatment, they also look at the issues it raises, and evaluate how far treatments can, and should, go.