Patient

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

Brain On Fire: My Month of Madness

Author: Susannah Cahalan
Publisher: Penguin UK
ISBN: 0141975350
Category : Biography & Autobiography
Languages : en
Pages : 288

Book Description
'My first serious blackout marked the line between sanity and insanity. Though I would have moments of lucidity over the coming days and weeks, I would never again be the same person ...' Susannah Cahalan was a happy, clever, healthy twenty-four-year old. Then one day she woke up in hospital, with no memory of what had happened or how she had got there. Within weeks, she would be transformed into someone unrecognizable, descending into a state of acute psychosis, undergoing rages and convulsions, hallucinating that her father had murdered his wife; that she could control time with her mind. Everything she had taken for granted about her life, and who she was, was wiped out. Brain on Fire is Susannah's story of her terrifying descent into madness and the desperate hunt for a diagnosis, as, after dozens of tests and scans, baffled doctors concluded she should be confined in a psychiatric ward. It is also the story of how one brilliant man, Syria-born Dr Najar, finally proved - using a simple pen and paper - that Susannah's psychotic behaviour was caused by a rare autoimmune disease attacking her brain. His diagnosis of this little-known condition, thought to have been the real cause of devil-possessions through history, saved her life, and possibly the lives of many others. Cahalan takes readers inside this newly-discovered disease through the progress of her own harrowing journey, piecing it together using memories, journals, hospital videos and records. Written with passionate honesty and intelligence, Brain on Fire is a searingly personal yet universal book, which asks what happens when your identity is suddenly destroyed, and how you get it back. 'With eagle-eye precision and brutal honesty, Susannah Cahalan turns her journalistic gaze on herself as she bravely looks back on one of the most harrowing and unimaginable experiences one could ever face: the loss of mind, body and self. Brain on Fire is a mesmerizing story' -Mira Bartók, New York Times bestselling author of The Memory Palace Susannah Cahalan is a reporter on the New York Post, and the recipient of the 2010 Silurian Award of Excellence in Journalism for Feature Writing. Her writing has also appeared in the New York Times, and is frequently picked up by the Daily Mail, Gawker, Gothamist, AOL and Yahoo among other news aggregrator sites.

The Power of Rare

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.

Chasing My Cure

Author: David Fajgenbaum
Publisher: Ballantine Books
ISBN: 1524799629
Category : Biography & Autobiography
Languages : en
Pages : 256

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

Living with Myasthenia Gravis

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.

Rare Like Us

Author: Taylor Kane
Publisher: Bookbaby
ISBN: 9781543978810
Category : Biography & Autobiography
Languages : en
Pages : 0

Book Description
Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future. In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud. This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.

The Boy Who Loved Too Much

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.

The Journey Home

Author: Shirleen Von Hoffmann
Publisher: Dog Ear Publishing
ISBN: 1598580213
Category : Cancer
Languages : en
Pages : 245

Book Description

Sick Girl

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.

A Snowflake in the Desert

Author: Yousra Hedna
Publisher:
ISBN:
Category :
Languages : en
Pages : 273

Book Description
Jenna is an ordinary 12-year-old girl. One summer day, she notices that her body can no longer do the things it used to. She becomes unable to walk, open her eyes, eat, etc. She soon notices that there is something wrong with her. At the end of summer, she is taken to doctors and diagnosed with a rare, chronic, auto-immune, neuromuscular illness called Myasthenia Gravis. Jenna's life is no longer the same, dealing with doctors, medicine, school and friendships all simultaneously. Jenna learns to deal with the illness but starts struggling with the side effects of her medication, taking a huge toll on mental health, such as anxiety. Jenna soon learns that strength isn't something possible solely through muscle, but rather so much more. Read to follow Jenna's journey. Read A Snowflake In The Desert to get raw, emotional and real insight on what life with a rare disease for a young girl is really like, and how an individual's life is affected. This book is a perfect read for people above age 12 to learn about what life with a chronic, rare disease is like, and how to cope with it. By reading this book, you are helping spread awareness about the illness: Myasthenia Gravis If you are someone with a chronic disease yourself, you will definitely enjoy and relate to this book.