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The prognosis for individuals with Duchenne Muscular Dystrophy (DMD) is improving, with some men with DMD living into their 30s and 40s. More vital than ever, this book helps teachers and parents to support children and young people with DMD with their education and transition into adulthood. Leading experts on DMD explain Duchenne and its impact in easy-to-understand terms. Going beyond physical management, particular focus is put on learning and behavioural issues, including speech delay and difficulty learning to read, as well as common comorbid conditions, such as ADHD, autism and OCD. Raising aspirations, the book gives guidance on effective support in the classroom and advice on the transition to adulthood, employment and independent living.
This volume explores experimental approaches used to study Duchenne muscular dystrophy (DMD), an X-linked degenerative skeletal muscle disease caused by mutations in the dystrophin gene. Including the latest progress and scientific achievements, the book covers recent discoveries achieved through in vivo gene editing which have proven to be promising in restoring dystrophin expression, at least in ameliorating skeletal muscle symptoms, and the contents focus on “Omics” techniques in gene expression, protein expression, miRNAs, and long non-coding RNA analysis, as well as experimental studies of the structural/functional changes affecting the skeletal and cardiac muscles and ongoing preclinical studies and clinical trials. Written in the highly successful Methods in Molecular Biology series format, chapters include introductions to their respective topics, lists of the necessary materials and reagents, step-by-step, readily reproducible laboratory protocols, and tips on troubleshooting and avoiding known pitfalls. Authoritative and practical, Duchenne Muscular Dystrophy: Methods and Protocols serves as a guide for researchers exploring the complicated nature of dystrophin in the hope of helping the victims of this disorder.
Dan's an up-beat boy who loves to have a blast. And like many young boys, he was born with Duchenne muscular dystrophy. This is his story.
This is a practical guide for Occupational Therapists and others who provide services to people who have Duchenne muscular dystrophy. The goal of the book is to deepen the readers understanding of the support that occupational therapists can offer to families who are affected by this condition. Written by experienced occupational therapists with a special interest in Duchenne muscular dystrophy. The book will provide information and support to therapists who may be working in isolation, or who rarely work with this client group. It is for the experienced therapist as well as the student. Each chapter of this book gives a clear and comprehensive description of different aspects of occupational therapy assessments and interventions.
This practical and concise guide offers an overview of muscular dystrophy's complicated features, treatment options and general resources. New treatments and a greater understanding of proteins and structures associated with MD are discussed along with long term patient care. Also included are clinical and developmental challenges within the current regulatory landscape and recent scientific and clinical advances. Muscular Dystrophy offers clinicians, researchers, pharmaceutical executives and patient advocacy groups an easy-to-read reference that provides the necessary perspectives of the care giver and patient.
Duchenne Muscular Dystrophy (DMD) is one of the most prevalent genetic disorders of childhood and currently stands as an incurable condition. This authoritative guide provides a clear overview of the latest current and experimental approaches to the treatment of DMD and examines the clinical, genetic, and pathophysiological aspects of the disease i
This book entitled, “Duchenne Muscular Dystrophy- A Guide”, is a comprehensive and easyguide to parents, other family members and care takers which presents the classification of Muscular Dystrophies. However Duchenne Muscular Dystrophy (DMD) alone is elaborated in detail, as DMD is the predominant Genetic Disorder which is widely observed in our society among various group of people in various geographical areas of the country and even world. This book presents a structured management methods for the care takers, while details the necessary information and guidelines to the parents of the DMD patients regarding, Lungs and Breath Care, Food and Digestive Care, Spinal Cord Care, Heart related Care, Medications and Steroid related Care etc. Symptoms and Stages of DMD are also presented. This book emphasizes the need for providing the comfortable areas for the DMD patient to be explored. A brief overview about the adaptability and movement issues of the patients are listed in a crispy way. This will be helpful to the teachers while the patients are at schools. Meanwhile this will be beneficial to the parents while they bring their wards to some public areas. Finally this guide accentuates the key points to make the society free from Muscular Dystrophy.
Muscular Dystrophy - Total Treatment Plan is an original treatise in which the MD patients, their care givers, researchers, teachers, doctors, nurses, and health planners will find reliable knowledge. This 'Do It'book is guaranteed to transform every reader. Right from etiology of the disease, to treatment by different systems of medicine, to counseling and rehabilitation, fascinating case histories and references, reassuring answers to disturbing questions, with appropriate warnings and useful notes, the book has everything in it. See the contents page for more information. Evidence based medicine has much to learn from Holistic Healing or Integration in Medicine to serve the patients.
In this refreshingly relatable memoir, David K. humanizes the experience of life with Duchenne muscular dystrophy. His many poignant recollections act as a prism, making the invisible visible, and demystifying the reality of having this neuromuscular disease. Among his many experiences: Being a "normal" college student: living away from home, staying in a dorm, learning independence, partying Confronting his early mortality at the age of 13, and being entirely unprepared to deal with it Kissing a girl for the first time at age 19, and realizing that women could indeed be interested in someone with a severe disability Learning he needed a ventilator the hard way: nearly suffocating when out with friends, and rushing home in a panic David does not sugarcoat anything, nor does he spout a lot of empty inspirational rhetoric. All he does is peel back the curtain and show what it's really like to live with a disability.
Parents of children with muscular dystrophy have many questions and, in his long years of practice, Dr. Irwin Siegel has heard most of them. If you've ever asked, "Do the arms also weaken in Duchenne muscular dystrophy?" or "What toys are appropriate for the child with DMD?" or "Is any specific physical therapy or occupational therapy useful in the middle stages of Duchenne dystrophy?" you'll find help in "Muscular Dystrophy in Children: A Guide for Families. Written in the calm, reassuring voice of a senior physician, the book reflects the wide-ranging experiences of the long-time MDA clinic co-director at Rush-Presbyterian-St. Luke's Medical Center in Chicago. Siegel's specialties are orthopedic surgery and rehabilitation, but his sincere interest in the well-being of his patients and their families and the quality of information they receive has led him to publish 12 books, including a volume of poetry. This latest volume combines information on some of the practical and technical matters of day-to-day life in families with muscular dystrophy - wheelchair seating, bracing and dietary concerns, for example - with solid advice on getting through it all. This book was written for parents, families, teachers, and friends of children with muscular dystrophy (MD), and for older children. It was written to guide the child and his caregivers through the often frightening labyrinth of medical care that one enters when given the diagnosis of MD. The book will help the reader understand the significance of the signs and symptoms of the disease, the treatment options available, its probable course or outcome and what may affect it, and the currently available choices in directing therapy. The book is construed to inform and educate with state-of-the-art information. Its goal is to address questions and concerns in the most forthright and honest manner possible and to clearly define the available medical options at every stage of the disease and offer guidance even when it may seem that little or nothing can be done. "