Author: Ben Watt Publisher: Open Road + Grove/Atlantic ISBN: 0802192033 Category : Biography & Autobiography Languages : en Pages : 124
Book Description
A New York Times Notable Book of the Year: “Unforgettable . . . Few have told such a compelling life-story as skillfully” (San Francisco Chronicle). In the summer of 1992, on the eve of an American tour, singer/songwriter Ben Watt, one half of the Billboard-topping pop duo Everything But The Girl, was taken to a London hospital complaining of chest pain. As his condition worsened, doctors were baffled. He was eventually he was diagnosed with a rare life-threatening autoimmune disease called Churg-Strauss Syndrome. “To paraphrase Joseph Heller,” Ben says, “you know it’s something serious when they name it after two guys.” By the time he came home, two-and-half-months later, his ravaged body was forty-six pounds lighter, and he was missing most of his small intestine. “Unfold[ing] like a page-turning mystery” (The Los Angeles Times), and “told with great wit and without self-pity, Patient is a sobering look at how life can suddenly be transformed into a humbling vaudeville of tests, IV’s, catheters, and bedpans” (The New York Times Book Review). Injecting a frankness and natural humility into his “funny, frightening, and piercingly vulnerable” (Interview) chronicle of a medical nightmare, Ben writes about his childhood, reflects on family, and his shared life with band member and partner, Tracey Thorn. The result is “a vivid, finely wrought look at having one’s future yanked away, and surviving physically and emotionally” (Dallas Morning Star-Telegram). A Sunday Times Book of the Year A Village Voice Favorite Book of the Year An Esquire (UK) Best Non-Fiction Award Finalist
Author: Victoria Jackson Publisher: Simon and Schuster ISBN: 0692928995 Category : Biography & Autobiography Languages : en Pages : 272
Book Description
"The Power of Rare is equal parts science and inspiration. In her urgent drive to help her daughter, Victoria Jackson not only transformed the competitive world of biomedical research, but also created a new medical model for generations to come." —Arianna Huffington Victoria Jackson revolutionized the beauty industry in the 1980s and '90s with her "no make-up" approach to make-up and ultimately made Victoria Jackson Cosmetics into a billion-dollar global brand. But her greatest test of the power of rare didn't come until her daughter, Ali, was diagnosed with neuromyelitis optica, or NMO—a rare, life-threatening autoimmune disease—and Victoria, driven by a mother's love, set out to find a cure for her daughter. Within days of hearing Ali's diagnosis in 2008, Victoria began the Guthy-Jackson Charitable Foundation to fund medical research into this often misdiagnosed orphan disease. Her "blueprint" called for breaking down the so-called silos of traditional medical research and bringing together some of the greatest minds to collaborate and share their findings. She hadn't expected to galvanize how medical research works, but within only a few years, that's just what she did. By focusing on the "rare" in each of us, the foundation has catalyzed breakthroughs in NMO in record time. These advances are also opening new doors to solving MS, lupus, and other autoimmune diseases—plus diseases that are not so rare, including cancer, infection, aging, and more. It has been Victoria's guiding philosophy that if she can do it, anyone can. With The Power of Rare, she shares how the foundation harnessed the power of rare to speed discoveries that help patients. Through her business savvy, wit, and heart, she offers real-world advice and inspiration for others to tap into "rare" to empower their own breakthroughs.
Author: C.M. Lewis Publisher: Dorrance Publishing ISBN: 1647024536 Category : Biography & Autobiography Languages : en Pages : 112
Book Description
Living with Myasthenia Gravis: The Struggle Is Real: This Is My Story By: C.M. Lewis Being diagnosed with Myasthenia Gravis, or MG for short, C.M. Lewis shares this true story of her experience with this invisible rare non-contagious autoimmune disease. Having this illness takes considerable strength, as it tirelessly attacks her body, but C.M. Lewis proves that she is a warrior and is motivational for those who may be experiencing this illness as well.
Author: Susannah Cahalan Publisher: Simon and Schuster ISBN: 1451621396 Category : Biography & Autobiography Languages : en Pages : 294
Book Description
NOW A MAJOR MOTION PICTURE STARRING CHLOË GRACE MORETZ A “captivating” (The New York Times Book Review), award-winning memoir and instant New York Times bestseller that goes far beyond its riveting medical mystery, Brain on Fire is a powerful account of one woman’s struggle to recapture her identity. When twenty-four-year-old Susannah Cahalan woke up alone in a hospital room, strapped to her bed and unable to move or speak, she had no memory of how she’d gotten there. Days earlier, she had been on the threshold of a new, adult life: at the beginning of her first serious relationship and a promising career at a major New York newspaper. Now she was labeled as violent, psychotic, a flight risk. What happened? In an “unforgettable” (Elle), “stunningly brave” (NPR), and breathtaking narrative, Susannah tells the astonishing true story of her descent into madness, her family’s inspiring faith in her, and the lifesaving diagnosis that almost didn’t happen. “A fascinating look at the disease that…could have cost this vibrant, vital young woman her life” (People), Brain on Fire is an unforgettable exploration of memory and identity, faith and love, and a profoundly compelling tale of survival and perseverance.
Author: David Fajgenbaum Publisher: Ballantine Books ISBN: 1524799629 Category : Biography & Autobiography Languages : en Pages : 266
Book Description
LOS ANGELES TIMES AND PUBLISHERS WEEKLY BESTSELLER • The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research. “A wonderful and moving chronicle of a doctor’s relentless pursuit, this book serves both patients and physicians in demystifying the science that lies behind medicine.”—Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies and The Gene David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure “A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”—Angela Duckworth, #1 New York Times bestselling author of Grit “[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum’s stirring account of his illness will inspire readers.”—Publishers Weekly
Author: Amy Silverstein Publisher: Open Road + Grove/Atlantic ISBN: 1555848761 Category : Health & Fitness Languages : en Pages : 279
Book Description
This shockingly frank and irreverent memoir of a young woman’s life with a heart transplant “will inspire and choke you up with tears and laughter” (Larry King). At twenty-four, Amy Silverstein was your typical type-A law student: smart, driven, and highly competitive. With a full course load and a budding romance, it seemed nothing could slow her down. Until her heart began to fail. With a grace and force reminiscent of Lucy Grealy’s Autobiography of a Face or Susanna Kaysen’s Girl, Interrupted, Amy chronicles her medical saga from the first misdiagnosis to her astonishing and ongoing recovery. Her memoir is made all the more dramatic by the deliriously romantic bedside courtship with her future husband, and her uncompromising desire to become a mother. Distrustful of her doctors and insistent in her refusal to be the “grateful heart patient” she is expected to be, Amy presents a patient’s perspective that is truly eye-opening and even controversial. Amy’s shocking honesty and irreverent humor allow the reader to live her nightmare from the inside—an unforgettable experience that is both painfully disturbing and utterly compelling.
Author: John Hawkins Publisher: ISBN: 9781621823704 Category : Biography & Autobiography Languages : en Pages : 254
Book Description
Henri Termeer was one of the first of a pioneering group of business executives who built a disparate group of fledgling companies into a biotech industry that has driven decades of therapeutic innovation. During a 28-year career at Genzyme, including 26 years as CEO, he created a process of drug development that for the first time was patient-centered. He also helped forge biotech's public policy agenda and inspired a generation of entrepreneurs to take on large and important challenges. An extraordinary number of today's biotech leaders were directly mentored by Termeer. His own leadership was iconoclastic: He broke rules and took risks, setting ambitious goals and finding novel ways to reach them. In doing so he transformed an industry and brought hope to patients with a range of diseases previously deemed too rare to justify the investment needed to support the development of specific therapies. In Conscience and Courage, John Hawkins, an insightful analyst of healthcare leaders, reveals the philosophy, principles, methods, and habits of a prominent and successful CEO who defied convention to create an investor-owned global enterprise that put people before profits and improved the lives of thousands of forgotten patients.
Author: Jennifer Latson Publisher: Simon and Schuster ISBN: 1476774064 Category : Social Science Languages : en Pages : 309
Book Description
The acclaimed, poignant story of a boy with Williams syndrome, a condition that makes people biologically incapable of distrust, a “well-researched, perceptive exploration of a rare genetic disorder seen through the eyes of a mother and son” (Kirkus Reviews). What would it be like to see everyone as a friend? Twelve-year-old Eli D’Angelo has a genetic disorder that obliterates social inhibitions, making him irrepressibly friendly, indiscriminately trusting, and unconditionally loving toward everyone he meets. It also makes him enormously vulnerable. On the cusp of adolescence, Eli lacks the innate skepticism that will help him navigate coming-of-age more safely—and vastly more successfully. In “a thorough overview of Williams syndrome and its thought-provoking paradox” (The New York Times), journalist Jennifer Latson follows Eli over three critical years of his life, as his mother, Gayle, must decide whether to shield Eli from the world or give him the freedom to find his own way and become his own person. Watching Eli’s artless attempts to forge connections, Gayle worries that he might never make a real friend—the one thing he wants most in life. “As the book’s perspective deliberately pans out to include teachers, counselors, family, friends, and, finally, Eli’s entire eighth-grade class, Latson delivers some unforgettable lessons about inclusion and parenthood,” (Publishers Weekly). The Boy Who Loved Too Much explores the way a tiny twist in a DNA strand can strip away the skepticism most of us wear as armor, and how this condition magnifies some of the risks we all face in opening our hearts to others. More than a case study of a rare disorder, The Boy Who Loved Too Much “is fresh and engaging…leavened with humor” (Houston Chronicle) and a universal tale about the joys and struggles of raising a child, of growing up, and of being different.
Author: Wally Lamb Publisher: Cambridge University Press ISBN: 9780060391621 Category : Fiction Languages : en Pages : 884
Book Description
With his stunning debut novel, She's Come Undone, Wally Lamb won the adulation of critics and readers with his mesmerizing tale of one woman's painful yet triumphant journey of self-discovery. Now, this brilliantly talented writer returns with I Know This Much Is True, a heartbreaking and poignant multigenerational saga of the reproductive bonds of destruction and the powerful force of forgiveness. A masterpiece that breathtakingly tells a story of alienation and connection, power and abuse, devastation and renewal--this novel is a contemporary retelling of an ancient Hindu myth. A proud king must confront his demons to achieve salvation. Change yourself, the myth instructs, and you will inhabit a renovated world. When you're the same brother of a schizophrenic identical twin, the tricky thing about saving yourself is the blood it leaves on your bands--the little inconvenience of the look-alike corpse at your feet. And if you're into both survival of the fittest and being your brother's keeper--if you've promised your dying mother--then say so long to sleep and hello to the middle of the night. Grab a book or a beer. Get used to Letterman's gap-toothed smile of the absurd, or the view of the bedroom ceiling, or the influence of random selection. Take it from a godless insomniac. Take it from the uncrazy twin--the guy who beat the biochemical rap. Dominick Birdsey's entire life has been compromised and constricted by anger and fear, by the paranoid schizophrenic twin brother he both deeply loves and resents, and by the past they shared with their adoptive father, Ray, a spit-and-polish ex-Navy man (the five-foot-six-inch sleeping giant who snoozed upstairs weekdays in the spare room and built submarines at night), and their long-suffering mother, Concettina, a timid woman with a harelip that made her shy and self-conscious: She holds a loose fist to her face to cover her defective mouth--her perpetual apology to the world for a birth defect over which she'd had no control. Born in the waning moments of 1949 and the opening minutes of 1950, the twins are physical mirror images who grow into separate yet connected entities: the seemingly strong and protective yet fearful Dominick, his mother's watchful "monkey"; and the seemingly weak and sweet yet noble Thomas, his mother's gentle "bunny." From childhood, Dominick fights for both separation and wholeness--and ultimately self-protection--in a house of fear dominated by Ray, a bully who abuses his power over these stepsons whose biological father is a mystery. I was still afraid of his anger but saw how he punished weakness--pounced on it. Out of self-preservation I hid my fear, Dominick confesses. As for Thomas, he just never knew how to play defense. He just didn't get it. But Dominick's talent for survival comes at an enormous cost, including the breakup of his marriage to the warm, beautiful Dessa, whom he still loves. And it will be put to the ultimate test when Thomas, a Bible-spouting zealot, commits an unthinkable act that threatens the tenuous balance of both his and Dominick's lives. To save himself, Dominick must confront not only the pain of his past but the dark secrets he has locked deep within himself, and the sins of his ancestors--a quest that will lead him beyond the confines of his blue-collar New England town to the volcanic foothills of Sicily 's Mount Etna, where his ambitious and vengefully proud grandfather and a namesake Domenico Tempesta, the sostegno del famiglia, was born. Each of the stories Ma told us about Papa reinforced the message that he was the boss, that he ruled the roost, that what he said went. Searching for answers, Dominick turns to the whispers of the dead, to the pages of his grandfather's handwritten memoir, The History of Domenico Onofrio Tempesta, a Great Man from Humble Beginnings. Rendered with touches of magic realism, Domenico's fablelike tale--in which monkeys enchant and religious statues weep--becomes the old man's confession--an unwitting legacy of contrition that reveals the truth's of Domenico's life, Dominick learns that power, wrongly used, defeats the oppressor as well as the oppressed, and now, picking through the humble shards of his deconstructed life, he will search for the courage and love to forgive, to expiate his and his ancestors' transgressions, and finally to rebuild himself beyond the haunted shadow of his twin. Set against the vivid panoply of twentieth-century America and filled with richly drawn, memorable characters, this deeply moving and thoroughly satisfying novel brings to light humanity's deepest needs and fears, our aloneness, our desire for love and acceptance, our struggle to survive at all costs. Joyous, mystical, and exquisitely written, I Know This Much Is True is an extraordinary reading experience that will leave no reader untouched.
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Author: Ben Watt
Author: Victoria Jackson
Author: C.M. Lewis
Author: Susannah Cahalan
Author: David Fajgenbaum
Author: Shirleen Von Hoffmann
Author: Amy Silverstein
Author: John Hawkins
Author: Jennifer Latson
Author: Wally Lamb