The Official Parent's SourceBook on Sandhoff Disease (The Offical Parents Guide Series) / Edition 1

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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 sandhoff 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 sandhoff disease. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Sandhoff Disease: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Sandhoff Disease; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Sandhoff Disease; Chapter 5. Books on Sandhoff Disease; Chapter 6. Multimedia on Sandhoff Disease; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Nutrition; Appendix C. Finding Medical Libraries; Appendix D. Your Child's Rights and Insurance; ONLINE GLOSSARIES; SANDHOFF DISEASE GLOSSARY; INDEX. Related topics include: Gangliosidosis Beta Hexosaminidase B Defeciency, Gangliosidosis GM2 Type 2.
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Product Details

  • ISBN-13: 9780597830228
  • Publisher: Icon Group International, Incorporated
  • Publication date: 9/11/2002
  • Series: Official Parent Guides
  • Edition description: First Edition
  • Edition number: 1
  • Pages: 140
  • Product dimensions: 8.25 (w) x 11.00 (h) x 0.30 (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 sandhoff disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that sandhoff disease is often considered a synonym or a condition closely related to the following: Gangliosidosis Beta Hexosaminidase B Defeciency; Gangliosidosis GM2 Type 2.
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Table of Contents

Moving Forward

Chapter 1. The Essentials on Sandhoff Disease: Guidelines
What Is Sandhoff 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
Associations and Sandhoff Disease
Finding More Associations
Finding Doctors
Finding a Neurologist
Selecting Your Doctor
Working with Your Child's Doctor
Broader Health-Related Resources
Vocabulary Builder
Chapter 3. Clinical Trials and Sandhoff Disease
Recent Trials on Sandhoff Disease
Benefits and Risks
Keeping Current on Clinical Trials
General References
Vocabulary Builder

Chapter 4. Studies on Sandhoff Disease
Federally-Funded Research on Sandhoff Disease
E-Journals: PubMed Central
The National Library of Medicine: PubMed
Vocabulary Builder
Chapter 5. Books on Sandhoff Disease
Book Summaries: Online Booksellers
The National Library of Medicine Book Index
Chapters on Sandhoff Disease
General Home References
Vocabulary Builder
Chapter 6. Multimedia on Sandhoff Disease
Bibliography: Multimedia on Sandhoff Disease
Vocabulary Builder

Appendix A. Researching Your Child's Medications
Your Child's Medications: The Basics
Learning More about Your Child'sMedications
Commercial Databases
Contraindications and Interactions (Hidden Dangers)
A Final Warning
General References
Appendix B. Researching Nutrition
Food and Nutrition: General Principles
Finding Studies on Sandhoff Disease
Federal Resources on Nutrition
Additional Web Resources
Vocabulary Builder
Appendix C. Finding Medical Libraries
Finding a Local Medical Library
Medical Libraries Open to the Public
Appendix D. Your Child's Rights and Insurance
Your Child's Rights as a Patient
Parent Responsibilities
Choosing an Insurance Plan
NORD's Medication Assistance Programs
Additional Resources
Vocabulary Builder

Online Dictionary Directories

General Dictionaries and Glossaries


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