The 2002 Official Parent's Sourcebook on Down Syndrome

 
9780597832000: The 2002 Official Parent's Sourcebook on Down Syndrome
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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 down syndrome, 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 down syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Down Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Down Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Down Syndrome; Chapter 5. Patents on Down Syndrome; Chapter 6. Books on Down Syndrome; Chapter 7. Multimedia on Down Syndrome; Chapter 8. Periodicals and News on Down Syndrome; Chapter 9. Physician Guidelines and Databases; Chapter 10. Dissertations on Down Syndrome; 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; DOWN SYNDROME GLOSSARY; INDEX. Related topics include: Down's syndrome, Mosaic 21 Syndrome, Translocation 21 Syndrome, Trisomy 21, Trisomy 21 Syndrome, Trisomy G, Trisomy G Syndrome.

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

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 down syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that down syndrome is often considered a synonym or a condition closely related to the following: Down's syndrome; Mosaic 21 Syndrome; Translocation 21 Syndrome; Trisomy 21; Trisomy 21 Syndrome; Trisomy G.

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