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 fabry's 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 fabry's disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Fabry's Disease: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Fabry's Disease; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Fabry's Disease; Chapter 5. Patents on Fabry's Disease; Chapter 6. Books on Fabry's Disease; Chapter 7. Physician Guidelines and Databases; Chapter 8. Dissertations on Fabry's Disease; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; FABRY'S DISEASE GLOSSARY; INDEX. Related topics include: Alpha-Galactosidase A Deficiency, Anderson-Fabry Disease, angiokeratoma corporis diffusum, Angiokeratoma Diffuse, Ceramide Trihexosidase Deficiency, ceramide trihexoside lipoidosis, Glycolipid Lipidosis, glycosphingolipidosis, Hereditary Dystopic Lipidosis.
Book Description
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 fabry's disease (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 fabry's disease. It also gives you sources of information that can help you find a doctor in your local area specializing in treating fabry's disease. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with fabry's disease. Part II moves on to advanced research dedicated to fabry's disease. 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 fabry's disease. 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 fabry's disease or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with fabry's disease. 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 fabry's disease.
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 fabry's disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that fabry's disease is often considered a synonym or a condition closely related to the following: Alpha-Galactosidase A Deficiency; Anderson-Fabry Disease; angiokeratoma corporis diffusum; Angiokeratoma Diffuse; Ceramide Trihexosidase Deficiency; ceramide trihexoside lipoidosis.
Product Details
Would you like to update product info or give feedback on images?
|
Customer Reviews
|
Share your thoughts with other customers:
|
||||||||||||||||||||||
|
Most Helpful Customer Reviews
1 of 1 people found the following review helpful:
3.0 out of 5 stars
Good Start, but left some things out,
By Debra L Johnson (Concordia, MO United States) - See all my reviews
This review is from: The Official Parent's Sourcebook on Fabry's Disease: A Revised and Updated Directory for the Internet Age (Paperback)
...The book identifies only government research and does not specifically identify industry researchers TKT & Genzyme.The treatment section needs updated. TKT has produced and enzyme replacemnt therapy--Replagal and Genzyme has produced an enzyme replacement therapy--Fabrazyme. Both are approved by many European countries. Fabrazyme was approved in the US by the FDA on April 24, 2003.
1.0 out of 5 stars
A little outdated and not very informative,
This review is from: The Official Parent's Sourcebook on Fabry's Disease: A Revised and Updated Directory for the Internet Age (Paperback)
This book is outdated since many of the links are wrong and there are new treatments approved since publishing. It also doesn't really talk that much about the disease itself. The Fabry's support webpage is much more informative than this book. I recommend you save your money. Perhaps when an update is published it will be worth it again.
Share your thoughts with other customers: Create your own review
|
|
Tags Customers Associate with This Product(What's this?)Click on a tag to find related items, discussions, and people.
|
Sell a Digital Version of This Book in the Kindle Store
If you are a publisher or author and hold the digital rights to a book, you can sell a digital version of it in our Kindle Store.
Learn more
Customer Discussions
|
This product's forum
Active discussions in related forums
Search Customer Discussions
|
Related forums
|
