Product Description
Written for children with muscular dystrophy (MD) and their families,friends and teachers, this book is a guidethrough the often-frighteninglabyrinth of medical care that follows the diagnosis of MD.Forthright,clear, supportive and empowering, the book helps readers understand thesignificance of the signs and symptoms of the disease, treatment options,the disease's probable course and what may affect it, and choices indirecting therapy.This incomparable guide covers:
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The diagnosis of childhood muscular dystrophy
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Early childhood
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Prepuberty
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Fractures
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Adolescence
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Late problems
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Caregiver's self-help guide
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New research
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Suggestions for further reading.
Filled with state-of-the-art information, it honestly addresses questionsand concerns. Like having the finest doctor with a wonderful bedside mannerat your side throughout, this book clearly defines medical options at everystage of the disease and offers hope and guidance-even when it may seemthat little or nothing can be done. ... Read more

Product Description
The muscular dystrophies are a group of genetic diseases that severely affect children and adults. For sufferers and their family, the illness presents enormous physical and psychological challenges. Written specifically for people with muscular dystrophy and their families, this book answers many of the questions asked about how and why muscular dystrophy occurs, and how it will affect the life of a recently diagnosed child.

As well as presenting the reader with advice and an explanation of muscular dystrophy, the book also guides the reader towards further information on societies and support groups around the world, and reliable internet resources. It also contains a full glossary to aid the reader in their understanding of the disease.

The different types of muscular dystrophy are described throughout with a minimum of technical jargon. Questions relating to exercise, physiotherapy, surgery, and the emotional effects of the diseases are answered, and advice is given on the problems of schooling and choice of career.

Since publication of the first edition in 1994, the genes for almost all the different types of dystrophy have been identified, enabling prevention through genetic counselling, therefore relieving some of the worry for affected families. Drawn from his many years of experience treating patients, Professor Emery provides authoritative, yet compassionate advice for people living with this illness. ... Read more

Product Description
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. ... Read more

Product Description
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 in the context of emerging therapeutic modalities. The only available source on the subject, this reference emphasizes the importance of accurate diagnosis, carrier detection, and genetic counseling, and supplies state-of-the-art contributions on pharmacological interventions, regenerative medicine, and gene therapy. ... Read more

Product Description
The muscular dystrophies are an important group of inherited disorders.They are characterized by muscle wasting and weakness, but vary considerably in their clinical manifestations and severity. This text reviews our understanding of the most important of these disorders. In many instances, the genes and protein products responsible for the dystrophies have been identified and it is now possible to establish a precise diagnosis, detect preclinical cases, identify carriers and offer prenatal dianostic testing.The book goes on to describe the opportunities for management of the symptoms through respiratory care, physiotherapy and surgical correction of contracture, and examines the potential, in the future, for effective treatment utilizing the new techniques of gene and cell therapy. Professor Emery has invited chapters from the leading international experts in the field providing a unique insight into the current situation and the hopes for the future. ... Read more

Product Description
A living memoir of mothers journey with sons life threatening disease Duchenne Muscular Dystrophy. As a gift to present him for graduation and in celebration of his life now, while he still graces this planet with his life. For he has lived longer then "they" said he would. ... Read more

Customer Reviews (2)

IN YOR FACE duchenne muscular distophy...all pain...ALL GLORY!
first off my son is 7 and has dmd.misti has a very important reason to be here.this women has taken this horrible decease by the horns. she has devoted her life to duchenne muscular distrophy.and doing a hell of a job.i met here on facebook right after i found out about zanders(my son)condition.this book is a must if you like a good story.and a super must if you are affected by or have dmd.this is a fantastic xmas gift for a non believer.this book is also very well written.i am so fortunate to have talked to her a few times on the phone.shes in alaska and im in texas.she has helped me so much.and some of the proceeds go to the MDA.how can you lose,thats why i give it six stars.like i said we are friends on facebook through god. in other words she didnt pay me to right this. or tell me what to say.this is a no b.s. book.and one of the best ive read in a long while. she is real and good as gold....believe.

Every Duchenne parents should read this book.
The title and subtitle of this book are perfect. As I read it, I shared in the pain and in the glory of Luke and his mother.Not only does she tell a compelling story, but she encourages DMD parents to look within and without to find strength for this saga in which they find themselves.

This is a wonderfully honest, uplifting look into the world of DMD with a message ofhow to ride the emotional and physical roller coaster without being thrown off. Misty Vanderweele has had to hang on tight and has been regularly, roughly tossed right to the edge, with her heart in her throat, but she has clinched her teeth and refused to let her white-knuckled fingers lose their grip. Just staying on is winning. This book is a beacon of light for others facing the same challenges.

She takes you through the diagnosis of her son, the agony of watching him deteriorate, the value of the support she received from other family members, the many ways the family figured out how to accommodate Luke's disabilities, the quest for normalcy in the midst of chaos, the struggle to come to grips with a reality she longed to alter, the determination to make the most of what the family shared in terms of love and good times together, and the never-ending quest to make a difference for her son and for others.

Her book is a job well done. Every parent of a DMD child should read this book. Whether your child is newly diagnosed or a veteran of the DMD struggle, this book contains valuable information for you.



Pain Banishment: Don't Manage Your Pain, Banish It Completely - Even When Nothing Else Works ... Read more

Product Description
European Neuromuscular Centre, Baarn, The Netherlands. Discusses living with muscular dystrophy and coping with its physical effects. Written for people with this illness and their families, it answers many questions asked by those diagnosed with muscular dystrophy. Previous edition: c1994. Softcover. ... Read more

Customer Reviews (2)

ok on facts, light on sense
The medical aspects are dealt with fairly accessibly, but troubles me is the author's tone throughout the book - patronising, and his tendency to make statements that belie an extraordinary ignorance of human beings. What kind of weirdo would write a sentence like "....of course, the death of a child is always tragic, even when it is expected"?

There are a few such pronouncements in the book, but the whole thing is saturated with that strange arrogance that only doctors seem to manage - I think it comes from dealing so much with "the sick" and "suffering" family members, that they start thinking that doctors are some higher breed of "healthy" humans who are on earth to offer hope to poor unfortunates.

I would not recommend this book for parents.

A great source of information
This book uses easy to understand language to explain the complexities of this group of disorders.It is a good first book for individuals and families faced with the likelihood or reality of a muscular dystrophy diagnosis. ... Read more

Product Description
Here is a thoughtful new book for professionals who assist persons afflicted with neuromuscular disorders to help them and their families adapt to lifestyle changes accompanying the onset of these disorders. Health care professionals provide strategies to maintain the psychosocial well-being of children and adults with neuromuscular disorders which, in addition to physical damage, also assault the sense of self and challenge the individual’s ability to move and communicate. Chapters describe the psychosocial aspects of a variety of neuromuscular diseases such as Duchenne and myotonic muscular dystrophy, multiple sclerosis, amyotrophic lateral sclerosis, Friedeich’s ataxia, and Charcot-Marie-Tooth disease. The distinctive characteristics of each disease are examined with special attention given to the natural history, treatment, management, and psychosocial issues of the specific disorder.

Beyond the clinical and research importance of Muscular Dystrophy and Other Neuromuscular Diseases, it also addresses the anxiety, doubts, and questions felt by patients with chronic progressive disabilities and their families. This helpful guide is unique in the way it features the interaction of professionals in the social services, psychology, religion, and various medical specialties in the care and treatment of these patients. Professionals in all of these disciplines, as well as the patients and families afflicted by these disorders, will benefit from this valuable resource. ... Read more

Product Description
Here is a thoughtful new book for professionals who assist persons afflicted with neuromuscular disorders to help them and their families adapt to lifestyle changes accompanying the onset of these disorders. Health care professionals provide strategies to maintain the psychosocial well-being of children and adults with neuromuscular disorders which, in addition to physical damage, also assault the sense of self and challenge the individual’s ability to move and communicate. Chapters describe the psychosocial aspects of a variety of neuromuscular diseases such as Duchenne and myotonic muscular dystrophy, multiple sclerosis, amyotrophic lateral sclerosis, Friedeich’s ataxia, and Charcot-Marie-Tooth disease. The distinctive characteristics of each disease are examined with special attention given to the natural history, treatment, management, and psychosocial issues of the specific disorder.

Beyond the clinical and research importance of Muscular Dystrophy and Other Neuromuscular Diseases, it also addresses the anxiety, doubts, and questions felt by patients with chronic progressive disabilities and their families. This helpful guide is unique in the way it features the interaction of professionals in the social services, psychology, religion, and various medical specialties in the care and treatment of these patients. Professionals in all of these disciplines, as well as the patients and families afflicted by these disorders, will benefit from this valuable resource. ... Read more

Product Description
This is the second edition of a highly acclaimed monograph. It is currently the only book which considers Duchenne Muscular Dystrophy (DMD) in detail and critically evaluates the extensive published literature.The author draws on his extensive clinical experience and scientific knowledge to provide an account of one of the most common inherited diseases. After a brief historical introduction, he describes the clinical features of the disease, emphasizing the involvement of tissues other than skeletal muscle.The biochemistry, genetics, and molecular pathology are discussed in the context of recent research findings, building a picture of the role of dystrophin in the pathogenesis of the disease.Prevention through neonatal screening, carrier detection, genetic counselling, and prenatal diagnosis is covered extensively, stressing the importance of DNA markers and gene probes.Finally, the book discusses the management of patients with the disease and the possibilities for treatment, which include surgical correction of deformities, new drug treatments, the prospects for myoblast transfer, and the possibilities for gene therapy. ... Read more

Customer Reviews (1)

Excellent!!
I thought that this book was a great source.I had a report on the subject, and it helped alot ... Read more

Product Description
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading."Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing.This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so. ... Read more

Product Description
Univ. of Edinburgh, UK. Provides an update on research and new theories concerning Duchenne muscular dystrophy. Describes screening, prenatal diagnosis, genetic counseling, and management. Text provides new understanding of the progression of the disease and advances in management of respiratory and cardiac symptoms. Previous edition: c1993. ... Read more

Product Description
Webster's bibliographic and event-based timelines are comprehensive in scope, covering virtually all topics, geographic locations and people. They do so from a linguistic point of view, and in the case of this book, the focus is on "Duchenne Muscular Dystrophy," including when used in literature (e.g. all authors that might have Duchenne Muscular Dystrophy in their name). As such, this book represents the largest compilation of timeline events associated with Duchenne Muscular Dystrophy when it is used in proper noun form. Webster's timelines cover bibliographic citations, patented inventions, as well as non-conventional and alternative meanings which capture ambiguities in usage. These furthermore cover all parts of speech (possessive, institutional usage, geographic usage) and contexts, including pop culture, the arts, social sciences (linguistics, history, geography, economics, sociology, political science), business, computer science, literature, law, medicine, psychology, mathematics, chemistry, physics, biology and other physical sciences. This "data dump" results in a comprehensive set of entries for a bibliographic and/or event-based timeline on the proper name Duchenne Muscular Dystrophy, since editorial decisions to include or exclude events is purely a linguistic process. The resulting entries are used under license or with permission, used under "fair use" conditions, used in agreement with the original authors, or are in the public domain. ... Read more