This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to marfan syndrome (also Arachnodactyly; Contractural Arachnodactyly; Dolichostenomelia; Marfanoid Hypermobility Syndrome; Marfan's 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 marfan syndrome. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.
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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 marfan 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 marfan syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating marfan syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with marfan syndrome. Part II moves on to advanced research dedicated to marfan 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 marfan 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 marfan syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with marfan 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 marfan 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 marfan syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that marfan syndrome is often considered a synonym or a condition closely related to the following: Arachnodactyly; Contractural Arachnodactyly; Dolichostenomelia; Marfanoid Hypermobility Syndrome; Marfan's syndrome.
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Most Helpful Customer Reviews
17 of 17 people found the following review helpful:
1.0 out of 5 stars
Disappointing medical source book,
By John Morrell (Port St Lucie, FL United States) - See all my reviews
This review is from: The Official Patient's Sourcebook on Marfan Syndrome (Paperback)
Marfan Syndrome is a genetic disease with one fatal complication. Marfan patients can, and often do, die at any age from ruptured aortic aneurysms. This source book spends far more time instructing the reader on a patient's legal rights with their health insurance company than it does on any discussion of the best methods available to diagnose aortic aneurysms. If a Marfan patient wants to know the differences between the various medical tests used to determine if aortic replacement surgery is necessary, they won't find it here. If they want to know which medical tests allow the doctor to view the entire aorta, not just the aortic root, they will have to find it in another book because it isn't covered here. There is absolutely no explanation of the benefits of an MRI versus a CT Scan or echocardiogram, nor are the actual symptoms experienced by patients when their aorta is about to burst and kill them ever discussed. The book is written by a Medical Doctor who apparently expects Marfan patients to find a doctor and then place their total trust in that person, unencumbered by any knowledge to allow them to be sure they are receiving appropriate medical care. A patient suffering from any disease is much better equipped to battle it if they have as much knowledge as they can possibly obtain, which is why I purchased this book. I'm afraid I wasted my money, because this book provides very little substantive information about the diagnosis and treatment of aortic aneurysms in patients with Marfan Syndrome.
0 of 6 people found the following review helpful:
5.0 out of 5 stars
Ideal for new patients,
This review is from: The Official Patient's Sourcebook on Marfan Syndrome (Paperback)
I believe that anyone, who is new to Marfan Syndrome will find this directory extremely helpful. It guides you on how to find all kinds of information on Marfan.
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