The 2002 Official Patient's Sourcebook on Fragile X Syndrome - Softcover

Softcover

ISBN 10: 0597832013 ISBN 13: 9780597832017

Publisher: Icon Group Intl Inc, 2002

Synopsis

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 fragile x syndrome (also FRAXA; Marker X Syndrome; Martin-Bell Syndrome; X-linked mental retardation; X-linked Mental Retardation and Macroorchidism), 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 fragile x syndrome. 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.

About this title

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 fragile x 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 fragile x syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating fragile x syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with fragile x syndrome. Part II moves on to advanced research dedicated to fragile x 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 fragile x 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 fragile x syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with fragile x 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 fragile x 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 fragile x syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that fragile x syndrome is often considered a synonym or a condition closely related to the following: FRAXA; Marker X Syndrome; Martin-Bell Syndrome; X-linked mental retardation; X-linked Mental Retardation and Macroorchidism.

Edition details

• Publisher: Icon Group Intl Inc
• Publication date: 2002
• ISBN 10: 0597832013
• ISBN 13: 9780597832017
• Binding: Paperback
• Language: English
• Number of pages: 188
• Editor: Parker James N., Parker Philip M.