Breath from Salt


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.




Salt in My Soul


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.




Cystic Fibrosis


Book Description

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.




Alex


Book Description

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.




Breath


Book Description

Salz is a boy afflicted with cystic fibrosis -- though in the Middle Ages in Saxony no one can identify it as such. Instead he is an outcast, living with his unfeeling father and superstitious brothers in a hovel outside Hameln. His grandmother has kept Salz alive by having him avoid the mead and beer commonly drunk by all and by teaching him how to clear his lungs. When the townsfolk of Hameln are affected by a mold that grows on the hops -- poisoning their mead and beer -- Salz is one of the few who are unaffected. The mold's effect is hallucinogenic, and soon Hameln is in the grips of a plague of madness, followed by a plague of rats. It is only Salz who can proclaim the truth -- although it might cost him his life.




Breath


Book Description

A New York Times Bestseller A Washington Post Notable Nonfiction Book of 2020 Named a Best Book of 2020 by NPR “A fascinating scientific, cultural, spiritual and evolutionary history of the way humans breathe—and how we’ve all been doing it wrong for a long, long time.” —Elizabeth Gilbert, author of Big Magic and Eat Pray Love No matter what you eat, how much you exercise, how skinny or young or wise you are, none of it matters if you’re not breathing properly. There is nothing more essential to our health and well-being than breathing: take air in, let it out, repeat twenty-five thousand times a day. Yet, as a species, humans have lost the ability to breathe correctly, with grave consequences. Journalist James Nestor travels the world to figure out what went wrong and how to fix it. The answers aren’t found in pulmonology labs, as we might expect, but in the muddy digs of ancient burial sites, secret Soviet facilities, New Jersey choir schools, and the smoggy streets of São Paulo. Nestor tracks down men and women exploring the hidden science behind ancient breathing practices like Pranayama, Sudarshan Kriya, and Tummo and teams up with pulmonary tinkerers to scientifically test long-held beliefs about how we breathe. Modern research is showing us that making even slight adjustments to the way we inhale and exhale can jump-start athletic performance; rejuvenate internal organs; halt snoring, asthma, and autoimmune disease; and even straighten scoliotic spines. None of this should be possible, and yet it is. Drawing on thousands of years of medical texts and recent cutting-edge studies in pulmonology, psychology, biochemistry, and human physiology, Breath turns the conventional wisdom of what we thought we knew about our most basic biological function on its head. You will never breathe the same again.




Caesar's Last Breath


Book Description

The Guardian's Best Science Book of 2017: the fascinating science and history of the air we breathe. It's invisible. It's ever-present. Without it, you would die in minutes. And it has an epic story to tell. In Caesar's Last Breath, New York Times bestselling author Sam Kean takes us on a journey through the periodic table, around the globe, and across time to tell the story of the air we breathe, which, it turns out, is also the story of earth and our existence on it. With every breath, you literally inhale the history of the world. On the ides of March, 44 BC, Julius Caesar died of stab wounds on the Senate floor, but the story of his last breath is still unfolding; in fact, you're probably inhaling some of it now. Of the sextillions of molecules entering or leaving your lungs at this moment, some might well bear traces of Cleopatra's perfumes, German mustard gas, particles exhaled by dinosaurs or emitted by atomic bombs, even remnants of stardust from the universe's creation. Tracing the origins and ingredients of our atmosphere, Kean reveals how the alchemy of air reshaped our continents, steered human progress, powered revolutions, and continues to influence everything we do. Along the way, we'll swim with radioactive pigs, witness the most important chemical reactions humans have discovered, and join the crowd at the Moulin Rouge for some of the crudest performance art of all time. Lively, witty, and filled with the astounding science of ordinary life, Caesar's Last Breath illuminates the science stories swirling around us every second.




Salt to the Sea


Book Description

#1 New York Times bestseller and winner of the Carnegie Medal! "A superlative novel . . . masterfully crafted."--The Wall Street Journal Based on "the forgotten tragedy that was six times deadlier than the Titanic."--Time Winter 1945. WWII. Four refugees. Four stories. Each one born of a different homeland; each one hunted, and haunted, by tragedy, lies, war. As thousands desperately flock to the coast in the midst of a Soviet advance, four paths converge, vying for passage aboard the Wilhelm Gustloff, a ship that promises safety and freedom. But not all promises can be kept . . . This paperback edition includes book club questions and exclusive interviews with Wilhelm Gustloff survivors and experts.




The Years of Rice and Salt


Book Description

With the same unique vision that brought his now classic Mars trilogy to vivid life, bestselling author Kim Stanley Robinson boldly imagines an alternate history of the last seven hundred years. In his grandest work yet, the acclaimed storyteller constructs a world vastly different from the one we know. . . . “A thoughtful, magisterial alternate history from one of science fiction’s most important writers.”—The New York Times Book Review It is the fourteenth century and one of the most apocalyptic events in human history is set to occur—the coming of the Black Death. History teaches us that a third of Europe’s population was destroyed. But what if the plague had killed 99 percent of the population instead? How would the world have changed? This is a look at the history that could have been—one that stretches across centuries, sees dynasties and nations rise and crumble, and spans horrible famine and magnificent innovation. Through the eyes of soldiers and kings, explorers and philosophers, slaves and scholars, Robinson navigates a world where Buddhism and Islam are the most influential and practiced religions, while Christianity is merely a historical footnote. Probing the most profound questions as only he can, Robinson shines his extraordinary light on the place of religion, culture, power—and even love—in this bold New World. “Exceptional and engrossing.”—New York Post “Ambitious . . . ingenious.”—Newsday




Salt


Book Description

Roaming the Mediterranean Sea on sailboats and hunting down monsters is the only life seventeen-year-old Indi and his siblings have ever known. He never loved it, but now that his parents are gone—vanished during a hunt three months ago—it's harder and harder to fight his desire to escape. He's constantly battling his ferocious love for his siblings and the temptation of his parents' journal, which contains directions to a treasure that their parents hinted at. Maybe it's something valuable enough to distract Beleza from her mission to hunt down the monster that killed their parents. Something that would take the little kids away from the sea that's turning Oscar into a pirate and wasting Zulu's brilliant six-year-old mind. Something that could give Indi a normal life. Acclaimed author Hannah Moskowitz has reinvented yet another genre in this ridiculously propulsive epic that is part seafaring epic, part coming-of-age tale, and a totally warm-hearted story of a boy who loves his family and just wants to figure his own self out—if only the fate of the world weren't on his shoulders.