The Official Patient's Sourcebook on Epidermolysis Bullosa

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 epidermolysis bullosa, 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 epidermolysis bullosa. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Epidermolysis Bullosa: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Epidermolysis Bullosa; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Epidermolysis Bullosa; Chapter 5. Books on Epidermolysis Bullosa; Chapter 6. Periodicals and News on Epidermolysis Bullosa; Chapter 7. Physician Guidelines and Databases; Chapter 8. Dissertations on Epidermolysis Bullosa; 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; EPIDERMOLYSIS BULLOSA GLOSSARY; INDEX. Related topics include: Acantholysis Bullosa, Acanthosis Bullosa, Bullosa Hereditaria, Dominant and recessive epidermolysis bullosa, Dowling-Meara Syndrome, Epidermolysis Bullosa Acquisita, Epidermolysis Bullosa Hereditaria, Epidermolysis Bullosa Letalias, Epidermolysis bullosa letalis, Epidermolysis bullosa simplex, Epidermolysis Hereditaria Tarda, Goldscheider’s Disease, Hallopeau-Siemens Disease, Heinrichsbauer Syndrome.