Salt in My Soul

Salt in My Soul

Author: Mallory Smith

Publisher: Random House

Published: 2019-03-12

Total Pages: 336

ISBN-13: 1984855433

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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.


Breath from Salt

Breath from Salt

Author: Bijal P. Trivedi

Publisher: BenBella Books

Published: 2020-09-08

Total Pages: 744

ISBN-13: 1948836629

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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.


Five Feet Apart

Five Feet Apart

Author: Rachael Lippincott

Publisher: Simon & Schuster Books for Young Readers

Published: 2019-02-05

Total Pages: 288

ISBN-13: 1534451560

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Also a major motion picture starring Cole Sprouse and Haley Lu Richardson! Goodreads Choice Winner, Best Young Adult Fiction of 2019 In this #1 New York Times bestselling novel that’s perfect for fans of John Green’s The Fault in Our Stars, two teens fall in love with just one minor complication—they can’t get within a few feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella, she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?


Alex

Alex

Author: Frank Deford

Publisher: Open Road Media

Published: 2015-02-24

Total Pages: 115

ISBN-13: 1504007336

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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.


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

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

Author: Jay Gironimi

Publisher: Createspace Independent Publishing Platform

Published: 2013-09-15

Total Pages: 0

ISBN-13: 9781492739500

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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.


How Tobacco Smoke Causes Disease

How Tobacco Smoke Causes Disease

Author: United States. Public Health Service. Office of the Surgeon General

Publisher:

Published: 2010

Total Pages: 728

ISBN-13:

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This report considers the biological and behavioral mechanisms that may underlie the pathogenicity of tobacco smoke. Many Surgeon General's reports have considered research findings on mechanisms in assessing the biological plausibility of associations observed in epidemiologic studies. Mechanisms of disease are important because they may provide plausibility, which is one of the guideline criteria for assessing evidence on causation. This report specifically reviews the evidence on the potential mechanisms by which smoking causes diseases and considers whether a mechanism is likely to be operative in the production of human disease by tobacco smoke. This evidence is relevant to understanding how smoking causes disease, to identifying those who may be particularly susceptible, and to assessing the potential risks of tobacco products.


Coughing It All Up

Coughing It All Up

Author: Luke Peters

Publisher:

Published: 2020-12

Total Pages: 446

ISBN-13: 9781838306823

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Born in 1972, Luke Peters was diagnosed with the chronic and life-limiting condition cystic fibrosis. His parents were told it was likely that he would spend much of his childhood in hospital and would be lucky to reach his teenage years. Almost 50 years later, Luke is still alive, still fending off the impacts of this disease with one hand whilst grabbing life and all that it has to offer with the other. With a steadfast resolve to fulfil his ambitions and a determination not to let cystic fibrosis define him, Luke has filled his life with achievements that few would have predicted possible at his birth. With two academic degrees under his belt, successful careers both in aviation and as a lawyer, time spent living both in France and the United States as well as travels to over forty countries worldwide, a pilot's licence and two healthy children, Luke has always aimed to take as much out of life as possible before the ravages of cystic fibrosis take the life out of him. From amazing highs to the very depths of sadness and on more than one occasion when he has almost lost his life, Luke's book describes in vivid detail the twists and turns that he has endured during his life so far. Now facing the proposition of a double lung transplant, which could save his life but could also end it, Luke describes the events that have brought him to this point, how he has dealt with each of them and how he has continuously strived to live his life to be just the same as everyone else, whilst accepting that it is okay to be different. 'Coughing It All Up' is a testament to the power of a positive outlook, and will have you smiling, laughing and crying in equal measure. A share of the proceeds from the book will go to CF-related charities.


Muddy Thursday

Muddy Thursday

Author: Darla Garvey

Publisher:

Published: 2021-10-13

Total Pages: 338

ISBN-13: 9780578869834

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There is nothing remarkable about finding a penny on the sidewalk or bumping into an old friend on the street, but what if you stumble upon a lifeless child lying in the grass on a cold, dark night? What happens then? In Muddy Thursday, Darla Garvey tells us exactly what happens, because it happened to her. And that child? He was her son. Darla Garvey would have preferred to write a murder mystery, an action hero series, or even a folktale. Anything but a memoir that centers on the most traumatic event of her life - and that is the sudden, mysterious death of her twelve-year old son, Ray. But this is the story that chose her. Ray lived with cystic fibrosis (CF), a genetic life-threatening disease that primarily affects the lungs and digestive system. His daily care was complicated and time-consuming, but between respiratory treatments Ray lived as if he didn't have cystic fibrosis. He was equal parts charming, feisty, thoughtful, stubborn, and incredibly funny. In fact, nothing brought Ray more joy than making people laugh. So it seems especially cruel that a young boy who brought laughter to this world, and one who fought every day to slow the progression of his disease, would be blindsided by something else that shockingly took his life. Ray's younger sister, Martha was also diagnosed with cystic fibrosis. Not only did Martha lose her only sibling, she lost her best friend, her partner in crime, and the only other person she knew who had CF. After her brother's death, Martha was left to deal with complications from her illness without the one person who would have understood her fight and would have championed for her to hang in there. Muddy Thursday chronicles Martha's courageous journey with, and without, her brother. With her sense of humor, Garvey skillfully provides levity just when the reader needs it the most. And while Muddy Thursday is certainly a tragic, heartbreaking story, it is also a testament to one family's strength, courage and hope. Most of all, Muddy Thursday is a love story.


Pack Up the Moon

Pack Up the Moon

Author: Kristan Higgins

Publisher: Penguin

Published: 2021-06-08

Total Pages: 484

ISBN-13: 0451489497

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They used to joke about it. Like many brilliant scientists, Josh sometimes had trouble remembering things that needed doing in the “real” world—like buying groceries, eating regular meals, and talking to people. But he was happy to have his beloved wife, Lauren, remind him with her “honey do” lists. He just never realized how much he would need one when she was gone. Being a widower is not something Joshua Park ever expected. Given his solitary job, small circle of friends and family, and the social awkwardness he’s always suffered from, Josh has no idea how to negotiate this new, unwanted phase of life. But Lauren had a plan to keep him moving forward. A plan hidden in the letters she leaves him, giving him a task for every month in the year after her death. A plan that leads Joshua with a loving hand on a journey through grief, anger, and denial. It’s a journey that will take Joshua from his first outing as a widower to buy groceries…to an attempt at a dinner party where his lack of experience hosting creates a comic disaster…to finding a new best friend while weeping in the dressing room of a clothing store. As his grief makes room for new friendships and experiences, Joshua learns Lauren’s most valuable lesson: The path to happiness doesn’t follow a straight line. Funny, sometimes heart-wrenching, and always uplifting, this novel from New York Times bestselling author Kristan Higgins illuminates how life’s greatest joys are often hiding in plain sight.


Big Breath In

Big Breath In

Author: George Keulen

Publisher: FriesenPress

Published: 2021-11-04

Total Pages: 293

ISBN-13: 1039111483

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Big Breath In follows the ups and fateful downs of living with cystic fibrosis (CF), the journey to receiving a double lung transplant, and the hope of a second chance at life that transplant brings. Documenting the daily struggle of living with CF, George outlines both CF’s deadly consequences and how it works. Despite this, he stresses that people with CF are like everyone else, just trying to navigate the unpredictability of regular life, but through a CF lens. Documenting George’s declining health, culminating in being wait-listed for a double lung transplant, Big Breath In speaks to what it’s like to live with significantly decreased lung function, and what the process is to be wait-listed. George reveals his own struggle in trying to accept the "new normals" that his fragile health brought, and his need to let go of his "old life" and accept the new life he finds himself living. Over a year and a half later, perilously close to death, George kept waiting for a phone call that might not come in time. When a match is finally found, the longest wait of his life begins, complete with giant waves of hope and despair. In addition to writing about his surgery and immediate recovery in hospital, he also writes about other character-forming events, including the death of his brother, and meeting, dating, and marrying his wife. His experiences shaped him in incredible ways and helped him fight for his second chance at life.