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Star Babatoon tells the story of her son Hurricane, who was diagnosed with Duchenne muscular dystrophy when he was five and its impact on her and her family.
The term arthrogryposis describes a range of congenital contractures that lead to childhood deformities. It encompasses a number of syndromes and sporadic deformities that are rare individually but collectively are not uncommon. Yet, the existing medical literature on arthrogryposis is sparse and often confusing. The aim of this book is to provide individuals affected with arthrogryposis, their families, and health care professionals with a helpful guide to better understand the condition and its therapy. With this goal in mind, the editors have taken great care to ensure that the presentation of complex clinical information is at once scientifically accurate, patient oriented, and accessible to readers without a medical background. The book is authored primarily by members of the medical staff of the Arthrogryposis Clinic at Children's Hospital and Medical Center in Seattle, Washington, one of the leading teams in the management of the condition, and will be an invaluable resource for both health care professionals and families of affected individuals.
A compassionate, shame-free guide for your darkest days “A one-of-a-kind book . . . to read for yourself or give to a struggling friend or loved one without the fear that depression and suicidal thoughts will be minimized, medicalized or over-spiritualized.”—Kay Warren, cofounder of Saddleback Church What happens when loving Jesus doesn’t cure you of depression, anxiety, or suicidal thoughts? You might be crushed by shame over your mental illness, only to be told by well-meaning Christians to “choose joy” and “pray more.” So you beg God to take away the pain, but nothing eases the ache inside. As darkness lingers and color drains from your world, you’re left wondering if God has abandoned you. You just want a way out. But there’s hope. In I Love Jesus, But I Want to Die, Sarah J. Robinson offers a healthy, practical, and shame-free guide for Christians struggling with mental illness. With unflinching honesty, Sarah shares her story of battling depression and fighting to stay alive despite toxic theology that made her afraid to seek help outside the church. Pairing her own story with scriptural insights, mental health research, and simple practices, Sarah helps you reconnect with the God who is present in our deepest anguish and discover that you are worth everything it takes to get better. Beautifully written and full of hard-won wisdom, I Love Jesus, But I Want to Die offers a path toward a rich, hope-filled life in Christ, even when healing doesn’t look like what you expect.
Clinical practice related to sleep problems and sleep disorders has been expanding rapidly in the last few years, but scientific research is not keeping pace. Sleep apnea, insomnia, and restless legs syndrome are three examples of very common disorders for which we have little biological information. This new book cuts across a variety of medical disciplines such as neurology, pulmonology, pediatrics, internal medicine, psychiatry, psychology, otolaryngology, and nursing, as well as other medical practices with an interest in the management of sleep pathology. This area of research is not limited to very young and old patientsâ€"sleep disorders reach across all ages and ethnicities. Sleep Disorders and Sleep Deprivation presents a structured analysis that explores the following: Improving awareness among the general public and health care professionals. Increasing investment in interdisciplinary somnology and sleep medicine research training and mentoring activities. Validating and developing new and existing technologies for diagnosis and treatment. This book will be of interest to those looking to learn more about the enormous public health burden of sleep disorders and sleep deprivation and the strikingly limited capacity of the health care enterprise to identify and treat the majority of individuals suffering from sleep problems.
The moving tribute to the young man Oprah Winfrey called "an inspiration"-told by the woman who raised him. Mattie Stepanek's Heartsongs books were a phenomenon. Not only did they hit the bestseller lists, but the books-and Mattie himself- were a source of inspiration to many, and brought him major recognition. Jimmy Carter described young Mattie Stepanek as "the most remarkable person I have ever known." In Messenger, Jeni Stepanek shares the inspiring story of her son's life. Mattie was born with a rare disorder called Dysautonomic Mitochondrial Myopathy, and Jeni was advised to institutionalize him. Instead, she nurtured a child who transformed his hardships into a worldwide message of peace and hope. Though Mattie suffered through his disease, his mother's disabilities, and the loss of his three older siblings, he never abandoned his positive spirit. His Heartsong- the word he used to describe a person's inner self-spread a philosophy that peace begins with an attitude and can spread to the entire world.
Comprehensive in scope and definitive in authority, this second edition has been thoroughly updated to cover new practices, current epidemiological data and the evolving models that support the delivery of palliative medicine to children. This book is an essential resource for anyone who works with children worldwide.
A guide to programs currently available on video in the areas of movies/entertainment, general interest/education, sports/recreation, fine arts, health/science, business/industry, children/juvenile, how-to/instruction.
“A sensitive look at the social and political barriers that deny disabled people their most basic civil rights.”—The Washington Post “The primer for a revolution.”—The Chicago Tribune “Nondisabled Americans do not understand disabled ones. This book attempts to explain, to nondisabled people as well as to many disabled ones, how the world and self-perceptions of disabled people are changing. It looks at the rise of what is called the disability rights movement—the new thinking by disabled people that there is no pity or tragedy in disability and that it is society’s myths, fears, and stereotypes that most make being disabled difficult.”—from the Introduction
Generalized hypermobility has been known since ancient times, and a clinical description of Ehlers-Danlos syndrome (EDS) is said to have first been recorded by Hippocrates in 400 BC. Hypermobility syndromes occur frequently, but the wide spectrum of possible symptoms, coupled with a relative lack of awareness and recognition, are the reason that they are frequently not recognized, or remain undiagnosed. This book is an international, multidisciplinary guide to hypermobility syndromes, and EDS in particular. It aims to create better awareness of hypermobility syndromes among health professionals, including medical specialists, and to be a guide to the management of such syndromes for patients and practitioners. It is intended for use in daily clinical practice rather than as a reference book for research or the latest developments, and has been written to be understandable for any healthcare worker or educated patient without compromise to the scientific content. The book is organized as follows: chapters on classifications and genetics are followed by chapters on individual types, organ (system) manifestations and complications, and finally ethics and therapeutic strategies, with an appendix on surgery and the precautions which should attend it. A special effort has been made to take account of the perspective of the patient; two of the editors have EDS. The book will be of interest to patients with hypermobility syndromes and their families, as well as to all those healthcare practitioners who may encounter such syndromes in the course of their work.