The Official Patient's Sourcebook on Ehlers-Danlos Syndrome: A Revised and Updated Directory for the Internet Age [Paperback]

Icon Health Publications (Author)

Book Description

ISBN-10: 0597833710 | ISBN-13: 978-0597833717 | Publication Date: August 13, 2002

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.

Editorial Reviews

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

Product Details

• Paperback: 404 pages
• Publisher: ICON Health Publications (August 13, 2002)
• Language: English
• ISBN-10: 0597833710
• ISBN-13: 978-0597833717
• Product Dimensions: 10.9 x 8.2 x 1.1 inches
• Shipping Weight: 2.1 pounds (View shipping rates and policies)
• Average Customer Review: 2.5 out of 5 stars  See all reviews (2 customer reviews)
• Amazon Best Sellers Rank: #1,239,993 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

45 of 45 people found the following review helpful:

1.0 out of 5 stars This book is a waste of money, December 23, 2003

By 

Barbara J. Uggen-davis "IndyBarb" (Indianapolis, IN) - See all my reviews
(REAL NAME)   

This review is from: The Official Patient's Sourcebook on Ehlers-Danlos Syndrome: A Revised and Updated Directory for the Internet Age (Paperback)

I have Ehlers-Danlos Syndrome (EDS), so I purchased this book as soon as it came out. What a waste of money! It's chock full of factual errors, outdated data, and incorrect references.

In one section the book states that there are 10 types of EDS. In another place, it refers to the 6 types of EDS. In truth, it was believed that there were 10 types, but the Nosology in 1997 reclassified the EDS types, reducing the total to 6.

The book provides resources for EDS with incorrect websites and mailing addresses. Even these references are not consistent within the book. In one place the address is right and in another it uses an address that hasn't been used in a decade. No attempt was made by the authors to check their sources for accuracy.

There is a glossary of medical terms in the book, but this is the same glossary that appears every other "The Official Patient's Sourcebook". The terms included have no relationship to EDS at all.

Much of the book includes a listing of websites and instructions on how to do research online. If you know how to use a search engine, you don't need the book to find these sites. If you don't use the Internet, the book won't help.

In my opinion, the authors made one master sourcebook, then copied it for every disease and disorder known to man. Little effort was made to modify the books beyond the name of the condition. No matter what ails you, they figure they can get your money at least once.

3 of 4 people found the following review helpful:

4.0 out of 5 stars Ehlers Danlos Syndrome, June 27, 2007

By 

Sandra S. Walters "goatwoman" - See all my reviews
(REAL NAME)   

This review is from: The Official Patient's Sourcebook on Ehlers-Danlos Syndrome: A Revised and Updated Directory for the Internet Age (Paperback)

This is a very good book that gives information for finding all kinds of sources that have information about EDS. It is more of an information resource locator than a text book.