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 dermatomyositis, 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 dermatomyositis. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Dermatomyositis: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Dermatomyositis; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Dermatomyositis; Chapter 5. Patents on Dermatomyositis; Chapter 6. Books on Dermatomyositis; Chapter 7. Multimedia on Dermatomyositis; Chapter 8. Periodicals and News on Dermatomyositis; Chapter 9. Physician Guidelines and Databases; Chapter 10. Dissertations on Dermatomyositis; 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; DERMATOMYOSITIS GLOSSARY; INDEX. Related topics include: Idiopathic inflammatory myopathy.
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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 dermatomyositis (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 dermatomyositis. It also gives you sources of information that can help you find a doctor in your local area specializing in treating dermatomyositis. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with dermatomyositis. Part II moves on to advanced research dedicated to dermatomyositis. 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 dermatomyositis. 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 dermatomyositis or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with dermatomyositis. 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 dermatomyositis.
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 dermatomyositis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that dermatomyositis is often considered a synonym or a condition closely related to the following: Idiopathic inflammatory myopathy.
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3 of 3 people found the following review helpful:
1.0 out of 5 stars
Of little value,
By Digger O'Dell (Bethlehem, PA United States) - See all my reviews
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This review is from: The Official Patient's Sourcebook on Dermatomyositis: A Revised and Updated Directory for the Internet Age (Paperback)
I had anticipated several descriptive chapters on symptoms and prognosis of Dermatomyositis, but found about 4 pages.
The majority of the book is a listing of URL's (websites) of various entities, agencies and programs involved in experimentation & treatment. Many of the descriptions and links appear to be out of date. This book did not meet my expectations; I do not recommend it.
4.0 out of 5 stars
Good Book -But Not Up to Date with Specialists In Gulf Coast Area,
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This review is from: The Official Patient's Sourcebook on Dermatomyositis: A Revised and Updated Directory for the Internet Age (Paperback)
This book was delivered as promised via Amazon.com.
I could not put the book down for a few days until I read through it. It told me alotof things I already know. I wanted to know about Dermatomyositis and more. I was a little disappointed since it did not show many specialists and clinics in the Gulf Coast Area, ex. Louisiana. I am sure others with the disease will pick up on the same and feel they have to travel half way across the states to beproperly takencare of. That is definitely an unintentional, but obvious feeling I had. So I will mention the book was good, but maybe my story below will let folks know their are many outstanding specialists in their home towns, that they have not found. A more general and true statement in the book would have been that the United States is hurting for Rheumatologists. The book did give me much more appreciation for my own Rheumatologists, Doctors Philip Sedrish and Marielisa Sedrish at Gulfcoast Rheumatology at Slidell Memorial Hospital. They have been doing everything like clock work with me and I have been a very trying case for especially for Dr Philip Sedrish. These doctors are definitely experts in Rheumatology and all the other Auto-Immune Neuromuscular and Skin Diseases such as (RA, PM, DM, IBM, Sjogrens, Scleroderma, Lupus, ALS, etc...) that go along with their specialty. They referred me to the best specialists: Dermatology - Dr Eric Tabor; Cardiology - Dr Ignatius Thomas; Pulmonology - Doctor Dennis Dale and Doctor Janine Parker; Opthamology- Dr David Slagle; Gastroenternology - Dr Anthony Albright. These doctors all work well with each other and me to address all my symptoms associated with Dermatomyositis, Sjogrens, and Psoriasis. Thanks to these doctors, I have not had to drive 100 miles a trip to the MDA Clinic at Children'sHospital in New Orleans or even further as may others end up doing. Thank you to the authors of this book and my friends from The Myositis Association, Polymyositis and Dermatomyositis forum. I recommend this book to anyone diagnosed with a Auto-Immune Disease and associated Cancer. Bill Morell Diagnosed with Dermatomyositis, Sjogrens Syndrome, Psoriasis,GERD,and Sleep Apnea, with additional symptoms severe symptoms of Dyspnea, Dysphagia, Dysphonia, etc.. PS: I had to edit this quite a few times since my distal muscles have also been effected by oneorallof my Autoimmune diseases. My fingers miss or don't hit the spacebar hard enough on my home and work keyboards. My fingers also are deforming and stubby now so I am usually off a key, I hate misspelling because as a writer I am losing it.
3 of 5 people found the following review helpful:
5.0 out of 5 stars
book,
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This review is from: The Official Patient's Sourcebook on Dermatomyositis: A Revised and Updated Directory for the Internet Age (Paperback)
the book is very informative on this most complicated disease i recomend it highly
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