A great introduction to living with this genetic muscle condition. Important concepts simply explained, including "Second Wind", the "Six Second Rule" and the "ATP reservoir". Practical tips that people with this condition have found helpful. The aim is to avoid pain and muscle cramps, reduce or eliminate hospital visits and get more out of life. Foreword by Dr Ros Quinlivan.
This booklet provides referenced information to assist General Practitioners. McArdle Disease (Glycogen Storage Disease V) is an ultra rare metabolic disorder of the muscles. It should be managed in a specialist centre, but this booklet can help with issues arising in the primary care setting.
The account of the author's coming to terms with her diagnosis of a rare muscle disorder. She faces the challenges of a 210 mile long trek across the mountains of Wales. Includes a section on the development of walking courses for people with McArdle Disease and one of guidance for people with the condition who want to follow in her footsteps.
This handbook explains, in layman's terms, the cause, method of inheritance, history and current and future treatments of McArdle Disease (also known as Glycogen Storage Disease Type V). The handbook puts into plain English the published information relating to the scientific and medical research into McArdle Disease.
In the past decade, few subjects at the intersection of medicine and sports have generated as much public interest as sports-related concussions - especially among youth. Despite growing awareness of sports-related concussions and campaigns to educate athletes, coaches, physicians, and parents of young athletes about concussion recognition and management, confusion and controversy persist in many areas. Currently, diagnosis is based primarily on the symptoms reported by the individual rather than on objective diagnostic markers, and there is little empirical evidence for the optimal degree and duration of physical rest needed to promote recovery or the best timing and approach for returning to full physical activity. Sports-Related Concussions in Youth: Improving the Science, Changing the Culture reviews the science of sports-related concussions in youth from elementary school through young adulthood, as well as in military personnel and their dependents. This report recommends actions that can be taken by a range of audiences - including research funding agencies, legislatures, state and school superintendents and athletic directors, military organizations, and equipment manufacturers, as well as youth who participate in sports and their parents - to improve what is known about concussions and to reduce their occurrence. Sports-Related Concussions in Youth finds that while some studies provide useful information, much remains unknown about the extent of concussions in youth; how to diagnose, manage, and prevent concussions; and the short- and long-term consequences of concussions as well as repetitive head impacts that do not result in concussion symptoms. The culture of sports negatively influences athletes' self-reporting of concussion symptoms and their adherence to return-to-play guidance. Athletes, their teammates, and, in some cases, coaches and parents may not fully appreciate the health threats posed by concussions. Similarly, military recruits are immersed in a culture that includes devotion to duty and service before self, and the critical nature of concussions may often go unheeded. According to Sports-Related Concussions in Youth, if the youth sports community can adopt the belief that concussions are serious injuries and emphasize care for players with concussions until they are fully recovered, then the culture in which these athletes perform and compete will become much safer. Improving understanding of the extent, causes, effects, and prevention of sports-related concussions is vitally important for the health and well-being of youth athletes. The findings and recommendations in this report set a direction for research to reach this goal.
Children are the foundation of the United States, and supporting them is a key component of building a successful future. However, millions of children face health inequities that compromise their development, well-being, and long-term outcomes, despite substantial scientific evidence about how those adversities contribute to poor health. Advancements in neurobiological and socio-behavioral science show that critical biological systems develop in the prenatal through early childhood periods, and neurobiological development is extremely responsive to environmental influences during these stages. Consequently, social, economic, cultural, and environmental factors significantly affect a child's health ecosystem and ability to thrive throughout adulthood. Vibrant and Healthy Kids: Aligning Science, Practice, and Policy to Advance Health Equity builds upon and updates research from Communities in Action: Pathways to Health Equity (2017) and From Neurons to Neighborhoods: The Science of Early Childhood Development (2000). This report provides a brief overview of stressors that affect childhood development and health, a framework for applying current brain and development science to the real world, a roadmap for implementing tailored interventions, and recommendations about improving systems to better align with our understanding of the significant impact of health equity.
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.
This book reviews current methodology for assessing the health status of patients -- their 'quality of life' -- and shows how this methodology can be applied to specific diseases such as cancer, rheumatoid arthritis, angina and Parkinson's disease.
The loss of hearing - be it gradual or acute, mild or severe, present since birth or acquired in older age - can have significant effects on one's communication abilities, quality of life, social participation, and health. Despite this, many people with hearing loss do not seek or receive hearing health care. The reasons are numerous, complex, and often interconnected. For some, hearing health care is not affordable. For others, the appropriate services are difficult to access, or individuals do not know how or where to access them. Others may not want to deal with the stigma that they and society may associate with needing hearing health care and obtaining that care. Still others do not recognize they need hearing health care, as hearing loss is an invisible health condition that often worsens gradually over time. In the United States, an estimated 30 million individuals (12.7 percent of Americans ages 12 years or older) have hearing loss. Globally, hearing loss has been identified as the fifth leading cause of years lived with disability. Successful hearing health care enables individuals with hearing loss to have the freedom to communicate in their environments in ways that are culturally appropriate and that preserve their dignity and function. Hearing Health Care for Adults focuses on improving the accessibility and affordability of hearing health care for adults of all ages. This study examines the hearing health care system, with a focus on non-surgical technologies and services, and offers recommendations for improving access to, the affordability of, and the quality of hearing health care for adults of all ages.
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.
