The Official Patient's SourceBook on Ehlers-Danlos Syndrome

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Overview

This sourcebook has been created for patients 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 patients where and how to look for information covering virtually all topics related to ehlers-danlos 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 ...
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Overview

This sourcebook has been created for patients 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 patients where and how to look for information covering virtually all topics related to ehlers-danlos 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 ehlers-danlos syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Ehlers-Danlos Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Ehlers-Danlos Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Ehlers-Danlos Syndrome; Chapter 5. Books on Ehlers-Danlos Syndrome; Chapter 6. Periodicals and News on Ehlers-Danlos Syndrome; Chapter 7. Physician Guidelines and Databases; PART III. APPENDICES; Appendix A. Researching Your Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Rights and Insurance; ONLINE GLOSSARIES; EHLERS-DANLOS SYNDROME GLOSSARY; INDEX. Related topics include: E-D Syndrome, EDS.
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Product Details

  • ISBN-13: 9780597833717
  • Publisher: Icon Group International, Incorporated
  • Publication date: 8/13/2002
  • Series: Official Patient Guides
  • Edition number: 1
  • Pages: 404
  • Product dimensions: 8.25 (w) x 11.00 (h) x 0.83 (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 ehlers-danlos syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that ehlers-danlos syndrome is often considered a synonym or a condition closely related to the following: E-D Syndrome; EDS.
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Table of Contents

Introduction
Overview
Organization
Scope
Moving Forward

PART I: THE ESSENTIALS
Chapter 1. The Essentials on Ehlers-Danlos Syndrome: Guidelines
Overview
What Are Common Heritable Connective Tissue Disorders?
What Is Connective Tissue?
How Do People Get Gene Alterations?
Who Gets HDCTs?
How Does Genetic Counseling Help?
What Are the Symptoms of a HDCT?
How Do Doctors Diagnose HDCTs?
What are the Specifics of Ehlers-Danlos Syndrome?
What Treatments Are Available?
What Research Is Being Done on HDCTs?
Where Can I Find More Information About HDCTs?
More Guideline Sources
Vocabulary Builder
Chapter 2. Seeking Guidance
Overview
Associations and Ehlers-Danlos Syndrome
Finding More Associations
Finding Doctors
Selecting Your Doctor
Working with Your Doctor
Broader Health-Related Resources
Vocabulary Builder
Chapter 3. Clinical Trials and Ehlers-Danlos Syndrome
Overview
Recent Trials on Ehlers-Danlos Syndrome
Benefits and Risks
Keeping Current on Clinical Trials
General References
Vocabulary Builder

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
Chapter 4. Studies on Ehlers-Danlos Syndrome
Overview
The Combined Health Information Database
Federally-Funded Research on Ehlers-Danlos Syndrome
E-Journals: PubMed Central
The National Library of Medicine: PubMed
Vocabulary Builder
Chapter 5. Books on Ehlers-Danlos Syndrome
Overview
Book Summaries: Federal Agencies
Book Summaries: Online Booksellers
The National Library of Medicine Book Index
Chapters onEhlers-Danlos Syndrome
General Home References
Vocabulary Builder
Chapter 6. Periodicals and News on Ehlers-Danlos Syndrome
Overview
News Services & Press Releases
Newsletters on Ehlers-Danlos Syndrome
Newsletter Articles
Academic Periodicals covering Ehlers-Danlos Syndrome
Vocabulary Builder
Chapter 7. Physician Guidelines and Databases
Overview
NIH Guidelines
NIH Databases
Other Commercial Databases
The Genome Project and Ehlers-Danlos Syndrome
Specialized References
Vocabulary Builder

PART III. APPENDICES
Appendix A. Researching Your Medications
Overview
Your Medications: The Basics
Learning More about Your Medications
Commercial Databases
Contraindications and Interactions (Hidden Dangers)
A Final Warning
General References
Vocabulary Builder
Appendix B. Researching Alternative Medicine
Overview
What Is CAM?
What Are the Domains of Alternative Medicine?
Can Alternatives Affect My Treatment?
Finding CAM References on Ehlers-Danlos Syndrome
Additional Web Resources
General References
Vocabulary Builder
Appendix C. Researching Nutrition
Overview
Food and Nutrition: General Principles
Finding Studies on Ehlers-Danlos Syndrome
Federal Resources on Nutrition
Additional Web Resources
Vocabulary Builder
Appendix D. Finding Medical Libraries
Overview
Preparation
Finding a Local Medical Library
Medical Libraries Open to the Public
Appendix E. Your Rights and Insurance
Overview
Your Rights as a Patient
Patient Responsibilities
Choosing an Insurance Plan
Medicare and Medicaid
NORD's Medication Assistance Programs
Additional Resources

ONLINE GLOSSARIES
Online Dictionary Directories

EHLERS-DANLOS SYNDROME GLOSSARY
General Dictionaries and Glossaries

INDEX

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Sort by: Showing 1 Customer Reviews
  • Anonymous

    Posted January 22, 2003

    Accurate Information on EDS is needed

    Although the table of contents is impressive, this book is lacking in substance and useful information on Ehlers-Danlos Syndrome. The contact and publication information on related organizations is inaccurate and out of date.

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