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Synopsis: This book has been created for parents 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 parents where and how to look for information covering virtually all topics related to krabbé disease (also Galactocerebrosidase Deficiency; Galactoside Beta-Galactosidase Deficiency; Galactosyl Ceramide Lipidosis; Galactosylceramidase Deficiency; globoid cell brain sclerosis; Globoid cell leukodystrophy), 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 krabbé disease. Given parents' 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.
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 krabbé disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that krabbé disease is often considered a synonym or a condition closely related to the following: Galactocerebrosidase Deficiency; Galactoside Beta-Galactosidase Deficiency; Galactosyl Ceramide Lipidosis; Galactosylceramidase Deficiency; globoid cell brain sclerosis; Globoid cell leukodystrophy.
Title: The Official Parent's Sourcebook on Krabbe ...
Publisher: ICON Health Publications
Publication Date: 2003
Book Condition: very good
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