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 rett 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 rett syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Rett Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Rett Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Rett Syndrome; Chapter 5. Books on Rett Syndrome; Chapter 6. Multimedia on Rett Syndrome; Chapter 7. Physician Guidelines and Databases; Chapter 8. Dissertations on Rett 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; RETT SYNDROME GLOSSARY; INDEX. Related topics include: Autism, Dementia, Ataxia, and Loss of Purposeful Hand Use.
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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 rett 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 rett syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating rett syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with rett syndrome. Part II moves on to advanced research dedicated to rett 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 rett 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 rett syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with rett 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 rett 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 rett syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that rett syndrome is often considered a synonym or a condition closely related to the following: Autism, Dementia, Ataxia, and Loss of Purposeful Hand Use.
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This review is from: The Official Parent's Sourcebook on Rett Syndrome: A Revised and Updated Directory for the Internet Age (Paperback)
Unfortunately any book for the Internet Age will start to become obsolete before it is even printed. While this book provided a good presentation and relevant resources, in over a decade many of them are dated or broken.If you have a daughter with Rett Syndrome, a better resource is the virtual treatise on Rett Syndrome by Kathy Hunter, New Rett Syndrome Handbook, 2nd Edition (ISBN-10: 0977064409 ISBN-13: 978-0977064403). Kathy Hunter is not only the author but founded the International Rett Syndrome Association (IRSA) in 1984 with friends and families with individuals with Rett Syndrome. IRSA's first office was Kathy's kitchen table. I am privileged to have met Kathy & her daughter Stacie who turned 35 in May 2009. Kathy's passion, motivation & drive created an organization which is one of the only real resources for families with a daughter who has Rett Syndrome. A test to determine Rett Syndrome was only developed in December 1999. Rett Syndrome affects only 1 in every 10,000 to 15,000 girls. Our daughter has Rett Syndrome. When she was first diagnosed we were shocked and terrified, which over time turned to anger and frustration. Now we believe we are proactive and outspoken, although our effects pale to those of Kathy Hunter. Her book & and her organization IRSA are a must for anyone with a daughter with Rett Syndrome. The first edition, (ISBN-10: 0966952804 ISBN-13: 978-0966952803), although outdated by recent developments, is well worth reading even if you order the second edition from IRSA. Having seen and read parts of the second edition before publication, I can say it is even better, greatly expanded & updated. More information about Rett Syndrome can be found at UnicornMeadows. Our daughter Laura has Rett Syndrome but received her Angel wings at 9:32 AM on April 17, 2010, please visit UnicornMeadows org.
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