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The Official Parent's Sourcebook on Phenylketonuria. James N. Parker, Icon Health Publications

Download The Official Parent's Sourcebook on Phenylketonuria

The Official Parent's Sourcebook on Phenylketonuria James N. Parker, Icon Health Publications. pdf ebook
Publisher:
Language: English
Page: 228
ISBN: 0597832048, 9780585430409

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

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 phenylketonuria, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that phenylketonuria is often considered a synonym or a condition closely related to the following: Classical Phenylketonuria; Folling Syndrome; Hyperphenylalanemia; Hyperphenylalaninemia; Phenylalanine Hydroxylase Deficiency; Phenylalaninemia.

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