The Official Parent's Sourcebook on Infantile Refsum Disease: A Revised and Updated Directory for the Internet Age

 
9780597831171: The Official Parent's Sourcebook on Infantile Refsum Disease: 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 infantile refsum 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 infantile refsum disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Infantile Refsum Disease: Guidelines; Chapter 2. Seeking Guidance; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 3. Studies on Infantile Refsum Disease; Chapter 4. Books on Infantile Refsum Disease; Chapter 5. Multimedia on Infantile Refsum Disease; Chapter 6. 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; INFANTILE REFSUM DISEASE GLOSSARY; INDEX. Related topics include: Disorder of Cornification 11 (Phytanic Acid Type), DOC 11 (Phytanic Acid Type), Heredopathia Atactica Polyneuritiformis, Hypertrophic Neuropathy of Refsum, Phytanic Acid Storage Disease, Refsum Disease.

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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 infantile refsum 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 infantile refsum disease. It also gives you sources of information that can help you find a doctor in your local area specializing in treating infantile refsum disease. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with infantile refsum disease. Part II moves on to advanced research dedicated to infantile refsum 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 infantile refsum disease. 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 infantile refsum disease or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with infantile refsum 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 infantile refsum disease.

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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 infantile refsum disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that infantile refsum disease is often considered a synonym or a condition closely related to the following: Disorder of Cornification 11 (Phytanic Acid Type); DOC 11 (Phytanic Acid Type); Heredopathia Atactica Polyneuritiformis; Hypertrophic Neuropathy of Refsum; Phytanic Acid Storage Disease; Refsum Disease.

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