The Official Patient's SourceBook on Tuberous Sclerosis ( The Offical Patient's Guide Series) / Edition 1

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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 tuberous sclerosis, 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 tuberous sclerosis. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Tuberous Sclerosis: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Tuberous Sclerosis; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Tuberous Sclerosis; Chapter 5. Patents on Tuberous Sclerosis; Chapter 6. Books on Tuberous Sclerosis; Chapter 7. Multimedia on Tuberous Sclerosis; Chapter 8. Periodicals and News on Tuberous Sclerosis; Chapter 9. Physician Guidelines and Databases; Chapter 10. Dissertations on Tuberous Sclerosis; 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; TUBEROUS SCLEROSIS GLOSSARY; INDEX. Related topics include: Adenoma sebaceum, Bourneville disease, Bourneville Pringle Syndrome, Epiloia, Phakomatosis TS, Tuberose Sclerosis, Tuberous Sclerosis Complex, Tuberous Sclerosis-1.
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Product Details

  • ISBN-13: 9780597830143
  • Publisher: Icon Group International, Incorporated
  • Publication date: 9/9/2002
  • Series: Official Patient Guides
  • Edition description: First Edition
  • Edition number: 1
  • Pages: 208
  • Product dimensions: 8.25 (w) x 11.00 (h) x 0.44 (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 tuberous sclerosis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that tuberous sclerosis is often considered a synonym or a condition closely related to the following: Adenoma sebaceum; Bourneville disease; Bourneville Pringle Syndrome; Epiloia; Phakomatosis TS; Tuberose Sclerosis.
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Table of Contents

Moving Forward

Chapter 1. The Essentials on Tuberous Sclerosis: Guidelines
What Is Tuberous Sclerosis?
What Causes Tuberous Sclerosis?
Is TSC Inherited?
What Are the Signs and Symptoms of TSC?
How Is TSC Diagnosed?
How Is TSC Treated?
What Is the Prognosis?
What Research Is Being Done?
Where Can I Get More Information?
More Guideline Sources
Vocabulary Builder
Chapter 2. Seeking Guidance
Associations and Tuberous Sclerosis
Finding More Associations
Finding Doctors
Finding a Neurologist
Selecting Your Doctor
Working with Your Doctor
Broader Health-Related Resources
Vocabulary Builder
Chapter 3. Clinical Trials and Tuberous Sclerosis
Recent Trials on Tuberous Sclerosis
Benefits and Risks
Keeping Current on Clinical Trials
General References
Vocabulary Builder

Chapter 4. Studies on Tuberous Sclerosis
The Combined Health Information Database
Federally-Funded Research on Tuberous Sclerosis
E-Journals: PubMed Central
The National Library of Medicine: PubMed
Vocabulary Builder
Chapter 5. Patents on Tuberous Sclerosis
Patents on Tuberous Sclerosis
Patent Applications on Tuberous Sclerosis
Keeping Current
Vocabulary Builder
Chapter 6. Books on Tuberous Sclerosis
Book Summaries: Online Booksellers
The National Library of Medicine Book Index
Chapters on TuberousSclerosis
General Home References
Vocabulary Builder
Chapter 7. Multimedia on Tuberous Sclerosis
Bibliography: Multimedia on Tuberous Sclerosis
Vocabulary Builder
Chapter 8. Periodicals and News on Tuberous Sclerosis
News Services & Press Releases
Newsletters on Tuberous Sclerosis
Newsletter Articles
Vocabulary Builder
Chapter 9. Physician Guidelines and Databases
NIH Guidelines
NIH Databases
Other Commercial Databases
The Genome Project and Tuberous Sclerosis
Specialized References
Chapter 10. Dissertations on Tuberous Sclerosis
Dissertations on Tuberous Sclerosis
Keeping Current

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

Online Dictionary Directories

General Dictionaries and Glossaries


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