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 guillain-barrè 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 guillain-barrè syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Guillain-Barrè Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Guillain-Barrè Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Guillain-Barrè Syndrome; Chapter 5. Books on Guillain-Barrè Syndrome; Chapter 6. Multimedia on Guillain-Barrè Syndrome; Chapter 7. Periodicals and News on Guillain-Barrè Syndrome; Chapter 8. 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; Appendix F. NIH Consensus Statement on the Utility of Therapeutic Plasmapheresis for Neurological Disorders; ONLINE GLOSSARIES; GUILLAIN-BARRÈ SYNDROME GLOSSARY; INDEX. Related topics include: Acute idiopathic polyneuritis, Acute immune mediated polyneuritis , Acute Immune-Mediation Polyneuritis, Acute inflammatory demyelinating polyradiculopathy, Acute inflammatory neuropathy, Acute polyneuropathy, Acute segmentally demyelinating polyradiculoneuropathy.
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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 guillain-barrè 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 guillain-barrè syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating guillain-barrè syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with guillain-barrè syndrome. Part II moves on to advanced research dedicated to guillain-barrè 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 guillain-barrè 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 guillain-barrè syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with guillain-barrè 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 guillain-barrè 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 guillain-barrè syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that guillain-barrè syndrome is often considered a synonym or a condition closely related to the following: Acute idiopathic polyneuritis; Acute immune mediated polyneuritis ; Acute Immune-Mediation Polyneuritis; Acute inflammatory demyelinating polyradiculopathy; Acute inflammatory neuropathy; Acute polyneuropathy.
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3.0 out of 5 stars
I've read them all now,
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This review is from: The Official Patient's Sourcebook on Guillain-Barrč Syndrome: A Revised and Updated Directory for the Internet Age (Paperback)
Most of the reading population for GBS is limited to people like myself: those who've been struck with this rare disease and are searching for as much information as possible. By now you've all read "Bed Number Ten" and Joseph Heller's "No Laughing Matter" and, if you're wise, the best one out there which is Gareth Parry and Joel Steinberg's "Guillain-Barre syndrome" published by the American Neurological Association. Theirs is the book to buy and study, not this one. If you're like me and suffered through the disease and are now waiting patiently, as promised, for your life to return to normal, you're looking for answers. This particular book-even with it's interactive CDROM accompaniment offers no more than the typical thorough internet research you've already found. As far as the personal account books go, you've lived through that and though Susan Baier will help you to connect and feel less alone, even she begins to whine about "neglect" from medical staff-a common theme by the non-professional writers-because there is nothing that these medical professionals can do to make you feel better. You're going to have to survive the coma, the hallucinations, the paralysis, the inability to breath on your own and then the painstaking work to regain the use of your body. Then, for an untold amount of years you will learn to live with the excrutiating pain and, worse in my opinion, what is laughably referred to as "fatigue." Yes, a large number of GBS patients return to their normal activities from prior to GBS, but not me-not yet, and I'm nearly three years out now. No one speaks about how you FEEL while you're back to your old life. But something will always be different. This book and CD offer nothing more than you've already read. I promise you.
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