The Official Parent's SourceBook on Pelizaeus-Merzbacher Disease (Offical Parent's Guide Series) / Edition 1

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Overview

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 pelizaeus-merzbacher disease, 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 pelizaeus-merzbacher disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Pelizaeus-Merzbacher Disease: Guidelines; Chapter 2. Seeking Guidance; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 3. Studies on Pelizaeus-Merzbacher Disease; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Finding Medical Libraries; Appendix C. Your Child's Rights and Insurance; ONLINE GLOSSARIES; PELIZAEUS-MERZBACHER DISEASE GLOSSARY; INDEX. Related topics include: aplasia axialis extracorticalis congenita, Aplasia, Axialis Extracorticales Congenital, diffuse familial cerebral sclerosis, Pelizaeus-Merzbacher Disease, Sclerosis, Diffuse Familial Brain, Sudanophilic Leukodystrophy, Pelizaeus-Merzbacher Type.
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Product Details

  • ISBN-13: 9780597830211
  • Publisher: Icon Group International, Incorporated
  • Publication date: 9/11/2002
  • Series: Official Parent Guides
  • Edition description: First Edition
  • Edition number: 1
  • Pages: 108
  • Product dimensions: 8.25 (w) x 11.00 (h) x 0.22 (d)

Read an Excerpt

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 pelizaeus-merzbacher disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that pelizaeus-merzbacher disease is often considered a synonym or a condition closely related to the following: aplasia axialis extracorticalis congenita; Aplasia, Axialis Extracorticales Congenital; diffuse familial cerebral sclerosis; Pelizaeus-Merzbacher Disease; Sclerosis, Diffuse Familial Brain; Sudanophilic Leukodystrophy, Pelizaeus-Merzbacher Type.
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Table of Contents

Introduction
Overview
Organization
Scope
Moving Forward

PART I: THE ESSENTIALS
Chapter 1. The Essentials on Pelizaeus-Merzbacher Disease: Guidelines
Overview
What Is Pelizaeus-Merzbacher Disease?
Is There Any Treatment?
What Is the Prognosis?
What Research Is Being Done?
For More Information
More Guideline Sources
Vocabulary Builder
Chapter 2. Seeking Guidance
Overview
Associations and Pelizaeus-Merzbacher Disease
Finding More Associations
Finding Doctors
Finding a Neurologist
Selecting Your Doctor
Working with Your Child's Doctor
Broader Health-Related Resources
Vocabulary Builder

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
Chapter 3. Studies on Pelizaeus-Merzbacher Disease
Overview
Federally-Funded Research on Pelizaeus-Merzbacher Disease
E-Journals: PubMed Central
The National Library of Medicine: PubMed
Vocabulary Builder

PART III. APPENDICES
Appendix A. Researching Your Child's Medications
Overview
Your Child's Medications: The Basics
Learning More about Your Child's Medications
Commercial Databases
Contraindications and Interactions (Hidden Dangers)
A Final Warning
General References
Appendix B. Finding Medical Libraries
Overview
Preparation
Finding a Local Medical Library
Medical Libraries Open to the Public
Appendix C. Your Child's Rights and Insurance
Overview
Your Child's Rights as a Patient
Parent Responsibilities
Choosing an Insurance Plan
Medicaid
NORD's Medication Assistance Programs
AdditionalResources
Vocabulary Builder

ONLINE GLOSSARIES
Online Dictionary Directories

PELIZAEUS-MERZBACHER DISEASE GLOSSARY
General Dictionaries and Glossaries

INDEX

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