Download or read book It s One of Them written by Grace Saunders and published by Author House. This book was released on 2014-12-10 with total page 187 pages. Available in PDF, EPUB and Kindle. Book excerpt: Grace Saunders and her brother Ben were both born with the genetic disorder spinal muscular atrophy type 2/3, SMA. From her happy childhood growing up in Hertfordshire, enduring painful operations, to becoming a mom and a wife living an independent life in Coventry. Her extraordinary story of strength, not only coping with a severe physical disability, but being victim to domestic violence. Grace's story also involves drugs, murder, the police investigation that was Operation Ore and the death of her brother, aged thirty. This is a woman's struggle for a normal life, independence, and remarkably, having a healthy baby girl when she was told she would never be able to have children. She coped many years, being a single mother with the help of her family and personal care assistants. She writes about her education, care, and funny stories about the world of Internet dating. She tells her story with, honesty, humor, and heartfelt emotion, Grace shares the highs and lows she has faced and has come out the other side, although a little bruised, stronger than ever, and still smiling. Grace's attitude to the life she has been dealt with is, as she says, "It's One of Them "
Download or read book Living with Spinal Muscular Atrophy written by Trina Allen and published by . This book was released on 2006-09 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "November 3, 2003-April 27, 2004. Our love, our life, our angel. A day by day journey with SMA. Learn about SMA. See how life can change overnight. Feel the courage and strength. And much more"--Subtitles
Download or read book Searching For Every Step Finding Purpose in Living With Spinal Muscular Atrophy written by Kurt E. Beach and published by Beach Publishing LLC. This book was released on 2021-10-15 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: This inspiring memoir tells the story of a young man who is diagnosed with spinal muscular atrophy-a rare muscular disease-at a young age. In Searching for Every Step, author Kurt Beach offers his insight on the steps he took to find his true purpose in life. In his memoir, Beach recalls the steps and missteps he took in order to manage his bout with SMA and how this rare condition played a part in many decisions he made throughout his life. Despite his rare circumstances, his struggles are struggles we all face. Through his condition, he finds the courage and strength to overcome physical, emotional, and social obstacles concerning his career aspirations, schooling, romantic relationships, and even adoption. During a life changing event, Beach finds what he is missing in life. This experience not only shows him what kind of strength he has but what his true purpose in life is. Searching for Every Step delivers wisdom and inspiration to anyone who has struggled through life and gives them the inspiration to shift their focus away from their troubles and toward a more positive, faith-driven life
Download or read book Searching For Every Step Finding Purpose in Living With Spinal Muscular Atrophy written by Kurt E. Beach and published by Beach Publishing LLC. This book was released on 2021-10-15 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: This inspiring memoir tells the story of a young man who is diagnosed with spinal muscular atrophy-a rare muscular disease-at a young age. In Searching for Every Step, author Kurt Beach offers his insight on the steps he took to find his true purpose in life. In his memoir, Beach recalls the steps and missteps he took in order to manage his bout with SMA and how this rare condition played a part in many decisions he made throughout his life. Despite his rare circumstances, his struggles are struggles we all face. Through his condition, he finds the courage and strength to overcome physical, emotional, and social obstacles concerning his career aspirations, schooling, romantic relationships, and even adoption. During a life changing event, Beach finds what he is missing in life. This experience not only shows him what kind of strength he has but what his true purpose in life is. Searching for Every Step delivers wisdom and inspiration to anyone who has struggled through life and gives them the inspiration to shift their focus away from their troubles and toward a more positive, faith-driven life
Download or read book Progressive Spinal Muscular Atrophies written by Ingrid Gamstorp and published by Lippincott Williams & Wilkins. This book was released on 1984 with total page 264 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book NORD Guide to Rare Disorders written by National Organization for Rare Disorders and published by Lippincott Williams & Wilkins. This book was released on 2003 with total page 982 pages. Available in PDF, EPUB and Kindle. Book excerpt: NORD Guide to Rare Disorders is a comprehensive, practical, authoritative guide to the diagnosis and management of more than 800 rare diseases. The diseases are discussed in a uniform, easy-to-follow format--a brief description, signs and symptoms, etiology, related disorders, epidemiology, standard treatment, investigational treatment, resources, and references.The book includes a complete directory of orphan drugs, a full-color atlas of visual diagnostic signs, and a Master Resource List of support groups and helpful organizations. An index of symptoms and key words offers physicians valuable assistance in finding the information they need quickly.
Download or read book I Live a Life Like Yours written by Jan Grue and published by FSG Originals. This book was released on 2021-08-17 with total page 272 pages. Available in PDF, EPUB and Kindle. Book excerpt: "A quietly brilliant book that warms slowly in the hands." —Dwight Garner, The New York Times I am not talking about surviving. I am not talking about becoming human, but about how I came to realize that I had always already been human. I am writing about all that I wanted to have, and how I got it. I am writing about what it cost, and how I was able to afford it. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. I Live a Life Like Yours is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.
Download or read book Spinal Muscular Atrophy written by Charlotte J Sumner and published by Academic Press. This book was released on 2016-10-24 with total page 506 pages. Available in PDF, EPUB and Kindle. Book excerpt: Spinal Muscular Atrophy: Disease Mechanisms and Therapy provides the latest information on a condition that is characterized by motoneuron loss and muscle atrophy, and is the leading genetic cause of infant mortality. Since the identification of the gene responsible for SMA in 1995, there have been important advances in the basic understanding of disease mechanisms, and in therapeutic development. This book provides a comprehensive accounting of recent advances in basic and clinical research that covers SMA clinical features and standards of care, multifaceted aspects of SMN protein functions and SMA disease pathology, various animal models, and biomarkers, as well as current therapeutic development. This title is ideal for graduate students/postdocs and principal investigators who are already in the SMA field and need to keep updated on recent findings and approaches, and for those who are new to, or would like to join, the field. Likewise, users will find an excellent source of reading for biotech/pharma scientists, clinical researchers, and practitioners, regulators, and patients and their advocacy organizations. Furthermore, this book is a handy reference for researchers and clinicians who may want to apply the research strategies and therapeutic approaches in SMA to other rare diseases. Provides comprehensive, up-to-date reviews by leading investigators on diverse topics of SMA, including clinical features and patient care, SMN genetics and protein functions, animal models, disease pathology and mechanisms, biomarkers, current therapeutic development, and the role of non-profit organizations in therapeutic development Written to bridge multiple disciplines and promote better communications among basic scientists, clinical researchers, and health care providers on the latest developments in SMA Includes outstanding questions and perspectives for future investigations and key references for additional detailed study
Download or read book Not So Different written by Shane Burcaw and published by Roaring Brook Press. This book was released on 2017-11-07 with total page 40 pages. Available in PDF, EPUB and Kindle. Book excerpt: Not So Different offers a humorous, relatable, and refreshingly honest glimpse into Shane Burcaw’s life. Shane tackles many of the mundane and quirky questions that he’s often asked about living with a disability, and shows readers that he’s just as approachable, friendly, and funny as anyone else. Shane Burcaw was born with a rare disease called spinal muscular atrophy, which hinders his muscles’ growth. As a result, his body hasn’t grown bigger and stronger as he’s gotten older—it’s gotten smaller and weaker instead. This hasn’t stopped him from doing the things he enjoys (like eating pizza and playing sports and video games) with the people he loves, but it does mean that he routinely relies on his friends and family for help with everything from brushing his teeth to rolling over in bed. A Chicago Public Library Best Book of 2017
Download or read book Laughing at My Nightmare written by Shane Burcaw and published by Macmillan. This book was released on 2014-10-14 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: "With acerbic wit & a hilarious voice, Shane Burcaw's YA memoir describes the challenges he faces as a 20-year-old with muscular atrophy. From awkward handshakes to trying to finding a girlfriend and everything in between"--
Download or read book Miracle Boy Grows Up written by Ben Mattlin and published by Skyhorse Publishing Inc.. This book was released on 2012-08-14 with total page 209 pages. Available in PDF, EPUB and Kindle. Book excerpt: No one thought Ben Mattlin would live past childhood.But that didn t stop...
Download or read book Neurodegeneration written by Anthony Schapira and published by John Wiley & Sons. This book was released on 2017-04-24 with total page 344 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book unites the diverse range of complex neurodegenerative diseases into a textbook designed for clinical practice, edited by globally leading authorities on the subject. Presents a clinically oriented guide to the diseases caused by neurodegeneration Templated chapters combine clinical and research information on neurodegenerative diseases beginning with the common elements before treating each disease individually Diseases are grouped by anatomical regions of degeneration and include common disorders such as Parkinson’s Disease, Alzheimer’s Disease, Amyotrophic Lateral Sclerosis/Motor Neuron Disease, and Multiple Sclerosis as well as less common diseases Edited by globally leading authorities on the subject, and written by expert contributing authors
Download or read book Management of Patients with Neuromuscular Disease written by John R. Bach and published by . This book was released on 2004 with total page 436 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book offers the interventions that the researchers and clinicians of the UMDNH-NJMS Center for Ventilator Management Alternatives and Pulmonary Rehabilitation have found most effective as well as the interventions offered by other investigators so that the clinician can choose among all available options. It is designed to be a comprehensive guide for the day-to-day management of these conditions.
Download or read book Strangers Assume My Girlfriend Is My Nurse written by Shane Burcaw and published by Roaring Brook Press. This book was released on 2019-04-30 with total page 256 pages. Available in PDF, EPUB and Kindle. Book excerpt: With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace. On the surface, these essays are about day-to-day life as a wheelchair user with a degenerative disease, but they are actually about family, love, and coming of age. Shane Burcaw is one half of the hillarious YouTube duo, Squirmy and Grubs, which he runs with his girlfriend, now fiancee, Hannah Aylward.
Download or read book How Lucky written by Will Leitch and published by HarperCollins. This book was released on 2021-05-11 with total page 274 pages. Available in PDF, EPUB and Kindle. Book excerpt: Curl up with this page-turning mystery perfect for fall 2022 Edgar Award Nominee for Best Novel “A fantastic novel. . . . You are going to like this a lot.”—Stephen King “What’s more thrilling than a fictional character speaking to us in a voice we haven’t heard before, a voice so authentic and immediate—think Huck Finn, Holden Caulfield, Mattie Ross—that we suspect it must’ve been there all along, that we somehow managed to miss it? Daniel, the protagonist of Will Leitch’s smart, funny, heartbreaking new novel How Lucky, is just such a voice, and I’m not sure it will ever completely leave my head, or that I want it to.”—Richard Russo For readers of The Curious Incident of the Dog in the Night-Time and Nothing to See Here, a first novel as suspenseful and funny as it is moving, the unforgettable story of a fiercely resilient young man living with a physical disability, and his efforts to solve a mystery unfolding right outside his door. Daniel leads a rich life in the university town of Athens, Georgia. He’s got a couple close friends, a steady paycheck working for a regional airline, and of course, for a few glorious days each Fall, college football tailgates. He considers himself to be a mostly lucky guy—despite the fact that he’s suffered from a debilitating disease since he was a small child, one that has left him unable to speak or to move without a wheelchair. Largely confined to his home, Daniel spends the hours he’s not online communicating with irate air travelers observing his neighborhood from his front porch. One young woman passes by so frequently that spotting her out the window has almost become part of his daily routine. Until the day he’s almost sure he sees her being kidnapped...
Download or read book Early Onset Scoliosis written by Colin Nnadi and published by Thieme. This book was released on 2021-04-14 with total page 721 pages. Available in PDF, EPUB and Kindle. Book excerpt: A comprehensive guide to modern treatment in a complex and evolving specialty FIVE STARS from Doody's Star Ratings™ Covering the spectrum of spinal deformity that occurs between birth and 10 years, early onset scoliosis (EOS) is an evolving specialty that faces unique challenges, especially in controlling the progression of the condition while allowing the growth of the developing spine, lungs and thorax. This important book was inspired by the inaugural early onset scoliosis meeting of spine surgeons and other medical professionals in Christ Church, Oxford, UK, in September 2011. It provides a complete picture of the field today, with topics ranging from spinal development and genetics to advances in medical management to breakthrough surgical techniques that offer promising new options for young patients. Special Features Provides practical, evidence-based solutions to managing the full range of congenital, idiopathic, neuromuscular and syndromic conditions that present in early onset scoliosis Describes pioneering surgical procedures, such as non-invasive, magnetically controlled growing rod systems that reduce the number of repetitive surgeries and hospitalizations Explores such complex topics as surgical strategies for sitting comfort and features of optimal heelchair seating Details treatments and outcome measures in diverse, multi-system disorders, such as early onset neuromuscular scoliosis Highlights perioperative care and the vital role of physiotherapy in children with EOS Introduces an EOS questionnaire that establishes validated, patient-reported data for outcome assessment Recognizing the importance of the multidisciplinary team approach in effective management, Early Onset Scoliosis offers the valuable international perspective of many leaders in the field. It is essential for orthopedic and pediatric surgeons, residents and trainees, who will use the book to develop a clear understanding of what EOS is, how it is best treated, and the principles that underlie effective clinical decision-making in these complex cases.
Download or read book Epidemiology of Drug Abuse written by Zili Sloboda and published by Springer Science & Business Media. This book was released on 2006-06-02 with total page 237 pages. Available in PDF, EPUB and Kindle. Book excerpt: As the drug abuse epidemic evolves, so do the tools needed to understand and treat it. Accordingly, Epidemiology of Drug Abuse takes the long view, cogently outlining what the book calls "the natural history of drug abuse" and redefining its complex phenomena to reflect our present-day knowledge. Twenty-six eminent contributors discuss the state and future of the field, balancing the practical concerns involved in gathering drug abuse data with the ethics of using the information. - Current thinking on pathways and etiology, as well as medical, psychological, and social sequelae of drug abuse - Proven, up-to-date methodologies for assessment - Challenges of gathering data from high-risk and other user populations - Sampling and application issues - Uses, sources, and limitations of treatment data - Analytical papers applying the methodologies to specific and global studies - The role of epidemiology studies in developing prevention strategies With this multifaceted approach to the subject, Epidemiology of Drug Abuse provides researchers and educators with a reference that sheds significant light on infrequently covered areas. In addition, its breadth and accessibility of coverage make it a teaching text suitable to courses in epidemiology, public health, and drug abuse.
