The Official Parent's Sourcebook on Mitochondrial Myopathies: A Revised and Updated Directory for the Internet Age

 
9780597830365: The Official Parent's Sourcebook on Mitochondrial Myopathies: A Revised and Updated Directory for the Internet Age

This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to mitochondrial myopathies, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on mitochondrial myopathies. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Mitochondrial Myopathies: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Mitochondrial Myopathies; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Mitochondrial Myopathies; Chapter 5. Books on Mitochondrial Myopathies; Chapter 6. Multimedia on Mitochondrial Myopathies; Chapter 7. Physician Guidelines and Databases; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; MITOCHONDRIAL MYOPATHIES GLOSSARY; INDEX. Related topics include: Chronic Progressive External Ophthalmoplegia and Myopathy, Chronic Progressive External Ophthalmoplegia with Ragged Red Fibers, Fukuhara Syndrome, hereditary external ophthalmoplegia, Kearns-Sayre Disease, Mitochondrial Cytopathy, Kearn-Sayre Type, Mitochondrial Myopathy, Encephalopathy, Lactic Acidosis, Stroke-Like Episod, Myoclonic Epilepsy, Myoclonic Progressive Familial Epilepsy, Myoclonus Epilepsy.

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From the Publisher:

This is a "must have" reference book for patients, parents, caregivers, and libraries with medical collections. This sourcebook is organized into three parts. Part I explores basic techniques to researching mitochondrial myopathies (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to mitochondrial myopathies. It also gives you sources of information that can help you find a doctor in your local area specializing in treating mitochondrial myopathies. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with mitochondrial myopathies. Part II moves on to advanced research dedicated to mitochondrial myopathies. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on mitochondrial myopathies. When possible, contact names, links via the Internet, and summaries are provided. In general, every attempt is made to recommend "free-to-use" options. Part III provides appendices of useful background reading for all patients with mitochondrial myopathies or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with mitochondrial myopathies. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with mitochondrial myopathies.

Excerpt. Reprinted by permission. All rights reserved.:

Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, 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." Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. ... This book has been created for patients who have decided to make education and research an integral part of the treatment process. ... While this sourcebook covers mitochondrial myopathies, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that mitochondrial myopathies is often considered a synonym or a condition closely related to the following: Chronic Progressive External Ophthalmoplegia and Myopathy; Chronic Progressive External Ophthalmoplegia with Ragged Red Fibers; Fukuhara Syndrome; hereditary external ophthalmoplegia; Kearns-Sayre Disease; Mitochondrial Cytopathy, Kearn-Sayre Type.

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