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Official Health Sourcebooks
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ICON Health Publications Official Health Sourcebooks |
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The Official Patient's Sourcebook
on
HUNTINGTON'S DISEASE
(Artificial insemination; Chronic Progressive Chorea; Chronic progressive hereditary chorea; Degenerative Chorea; Hereditary Chorea; Hereditary Chronic Progressive Chorea; Huntington chorea; Huntington's chorea; Huntington's disease; Very Early Onset Huntington's Disease; Woody Guthrie's Disease)
Revised and Updated for the Internet Age
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| Pages | : | 216 |
| Price | : | $28.95(USD) |
| ISBN | : | 0597830487 |
| Published | : | 2002 |
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Synopsis |
A comprehensive manual for anyone interested in self-directed research on Huntington's Disease. Fully referenced with ample Internet listings and glossary. |
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Related Conditions/Synonyms |
| Artificial insemination; Chronic Progressive Chorea; Chronic progressive hereditary chorea; Degenerative Chorea; Hereditary Chorea; Hereditary Chronic Progressive Chorea; Huntington chorea; Huntington's chorea; Huntington's disease; Very Early Onset Huntington's Disease; Woody Guthrie's Disease |
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Description |
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to huntington's disease (also Artificial insemination; Chronic Progressive Chorea; Chronic progressive hereditary chorea; Degenerative Chorea; Hereditary Chorea; Hereditary Chronic Progressive Chorea), 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 huntington's disease. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. |
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Table of Contents |
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Introduction Overview Organization Scope Moving Forward PART I: THE ESSENTIALS Chapter 1. The Essentials on Huntington’s Disease: Guidelines Overview What Is Huntington’s Disease? What Causes Huntington’s Disease? How is HD Inherited? What Are the Major Effects of the Disease? At What Age Does HD Appear? How Is HD Diagnosed? What Is Presymptomatic Testing? How Do I Decide Whether to Be Tested or Not? Is There a Treatment for HD? What Community Resources Are Available? What Research Is Being Done? The HD Gene and Its Product Cell Death in HD How Can I Help? What Is the Role of Voluntary Organizations? Information Resources More Guideline Sources Vocabulary Builder Chapter 2. Seeking Guidance Overview Associations and Huntington’s Disease Finding More Associations Finding Doctors Finding a Neurologist Selecting Your Doctor Working with Your Doctor Broader Health-Related Resources Vocabulary Builder Chapter 3. Clinical Trials and Huntington’s Disease Overview Recent Trials on Huntington’s Disease Benefits and Risks Keeping Current on Clinical Trials General References Vocabulary Builder PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL Chapter 4. Studies on Huntington’s Disease Overview The Combined Health Information Database Federally-Funded Research on Huntington’s Disease E-Journals: PubMed Central The National Library of Medicine: PubMed Vocabulary Builder Chapter 5. Books on Huntington’s Disease Overview Book Summaries: Online Booksellers The National Library of Medicine Book Index Chapters on Huntington’s Disease General Home References Vocabulary Builder Chapter 6. Multimedia on Huntington’s Disease Overview Bibliography: Multimedia on Huntington’s Disease Vocabulary Builder Chapter 7. Physician Guidelines and Databases Overview NIH Guidelines NIH Databases Other Commercial Databases The Genome Project and Huntington’s Disease Specialized References Vocabulary Builder Chapter 8. Dissertations on Huntington’s Disease Overview Dissertations on Huntington’s Disease Keeping Current PART III. APPENDICES Appendix A. Researching Your Medications Overview Your Medications: The Basics Learning More about Your Medications Commercial Databases Contraindications and Interactions (Hidden Dangers) A Final Warning General References Vocabulary Builder Appendix B. Researching Alternative Medicine Overview What Is CAM? What Are the Domains of Alternative Medicine? Can Alternatives Affect My Treatment? Finding CAM References on Huntington’s Disease Additional Web Resources General References Vocabulary Builder Appendix C. Researching Nutrition Overview Food and Nutrition: General Principles Finding Studies on Huntington’s Disease Federal Resources on Nutrition Additional Web Resources Vocabulary Builder Appendix D. Finding Medical Libraries Overview Preparation Finding a Local Medical Library Medical Libraries Open to the Public Appendix E. Your Rights and Insurance Overview Your Rights as a Patient Patient Responsibilities Choosing an Insurance Plan Medicare and Medicaid NORD’s Medication Assistance Programs Additional Resources Vocabulary Builder ONLINE GLOSSARIES Online Dictionary Directories HUNTINGTON’S DISEASE GLOSSARY General Dictionaries and Glossaries INDEX |
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Excerpt (Introduction) |
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Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.” The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ:
As the AHRQ mentions, finding the right information is not an obvious task. 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:
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. The Official Patient’s Sourcebook on Huntington’s Disease has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to Huntington’s disease, 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 Huntington’s disease. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on Huntington’s disease should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate options is always up to the patient in consultation with their physician and healthcare providers. Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching Huntington’s disease (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 Huntington’s disease. It also gives you sources of information that can help you find a doctor in your local area specializing in treating Huntington’s disease. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with Huntington’s disease. Part II moves on to advanced research dedicated to Huntington’s disease. 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 Huntington’s disease. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with Huntington’s disease or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with Huntington’s disease. 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 Huntington’s disease. Scope While this sourcebook covers Huntington’s disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that Huntington’s disease is often considered a synonym or a condition closely related to the following:
In addition to synonyms and related conditions, physicians may refer to Huntington’s disease using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for Huntington’s disease:
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to Huntington’s disease. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians. Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with Huntington’s disease will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with Huntington’s disease is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of Huntington’s disease, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. |
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Words Defined in the Vocabulary Builders |
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