Book Description
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. ... Read more

Customer Reviews (2)

Ideal for new patients
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.

Disappointing medical source book
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. ... Read more

Book Description
This up-to-date electronic book on CD-ROM provides the best collection available anywhere of official Federal government information and documents on the subject of Marfan Syndrome. This CD-ROM uses next-generation search technology that allows complete indexing and makes all files on the disc fully searchable. For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material.

This thoroughly researched collection presents vital information from many authoritative sources: National Institutes of Health (NIH), Centers for Disease Control (CDC), the Combined Health Information Database (CHID), the Food and Drug Administration (FDA), and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Contents include clinical and medical information, with information on signs, symptoms, testing, diagnosis, treatment, and more.

In addition, as a bonus we have included an encyclopedic collection of general medical and health documents - thousands of pages with extensive material from the CDC and NIH on hundreds of diseases and health topics from A to Z, along with FDA drug and medical publications, government consumer healthcare tips, disease prevention programs, dietary guidelines, and travelers' health information. Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 73 of the best sites for medical information! By using weblinks on the CD-ROM, you can quickly check for the latest clinical updates directly from the government.

This CD-ROM has over 30,000 pages reproduced using Adobe Acrobat PDF software and Reader software is included. Advanced search and indexing features are built into our reproduction, providing a complete full-text index. This enables the user to search all the files on the disk at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material. There is no other reference that is as fast, convenient, comprehensive, and portable!

Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents - they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM is NOT a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.) ... Read more

Book Description

Marfan Syndrome is a hereditary disorder of connective tissue which primarily affects the cardiovascular, skeletal, and ocular systems. Remarkable progress in the field has been made in both clinical and basic-science research since the discovery of the gene for fibrillin-1 (FBN1) in 1991, mutations in which cause the Marfan syndrome. Marfan Syndrome: A Primer for Clinicians and Scientists presents a comprehensive overview of clinical aspects of Marfan syndrome, FBN1 mutation analysis, the biology of fibrillin and fibrillin-containing microfibrils, and the molecular pathogenesis of the Marfan syndrome. The authors are prominent and active researchers in clinical and basic-science research on Marfan syndrome and fibrillin.

Book Description
This digital document is an article from Journal of Drugs in Dermatology, published by Journal of Drugs in Dermatology, Inc. on July 1, 2005. The length of the article is 1913 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Acne fulminans in Marfan syndrome.(CASE REPORTS)
Author: Uwe Wollina
Publication: Journal of Drugs in Dermatology (Magazine/Journal)
Date: July 1, 2005
Publisher: Journal of Drugs in Dermatology, Inc.
Volume: 4Issue: 4Page: 501(5)

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Book Description
The article is excerpted fromGale Encyclopedia of Medicine.

Consult the second edition of this authoritative, comprehensive, in-depth medical guide for information on more than 1,700 medical topics in language accessible to adult laypersons. Presented in a single alphabetical sequence, articles range in length from one or two paragraphs for minor topics, to several pages or more for major topics. Disease/disorder articles typically cover definition; description; causes and symptoms; diagnosis; treatments; prevention; and more. Test/treatment articles typically cover definition; purposes; precautions; preparation; risks; normal and abnormal results; and much more. This second edition includes more than 200 new entries, 300 updated entries, approximately 650 color images and illustrations, and a comprehensive subject index. New features include biographical and historical sidebars throughout the text.

Disease/disorder articles contain some or all of the following sections:

• Definitions -- brief dictionary-style definition of the disorder
• Descriptions -- overview of the disorder; who gets it and why
• Causes & symptoms -- process, substance or organism that produces the condition; any risk factors that increase susceptibility to the condition; signs and symptoms of the disease
• Diagnosis -- overview of procedures and tests used to diagnose the condition; how the test is done; who should be tested and when; time required; cost; whether it's typically covered by insurance
• Treatments -- overview of conventional methods of care or management of the condition, such as drugs, surgeries, physical therapy, etc.
• Alternative treatments -- overview of alternative/complementary therapies that may be used to treat the condition
• Prognosis -- probable outcome of the disease
• Preventions -- what actions can be taken to prevent the condition from occurring

Book Description
This digital document is an article from MedSurg Nursing, published by Jannetti Publications, Inc. on April 1, 1999. The length of the article is 4091 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

From the author: Marfan's syndrome is an autosomal dominant disorder that involves the cardiovascular, musculoskeletal, and ocular systems. Displaying a highly variable array of symptoms and course, the disease is underdiagnosed and misdiagnosed. Since Marfan's syndrome can have fatal consequences, advance practice and other adult health nurses need to recognize and manage its symptoms.

Citation Details
Title: Marfan Syndrome: Identification And Management.
Author: Leann Eaton
Publication: MedSurg Nursing (Refereed)
Date: April 1, 1999
Publisher: Jannetti Publications, Inc.
Volume: 8Issue: 2Page: 113

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Product Description
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." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with Marfan syndrome is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so. ... Read more

Book Description

Avoiding hard-to-understand medical jargon, the four-volume Gale Encyclopedia of Childrens Health uses language that parents can understand, while still providing enough depth to benefit today's health science students. The set provides in-depth coverage of pediatric diseases and disorders, along with issues related to physical and cognitive/behavioral development.

Book Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Marfan syndrome. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Marfan syndrome.If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.Download Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Marfan syndrome. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Marfan syndrome. If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages. ... Read more

Book Description
This digital document is an article from Southern Medical Journal, published by Southern Medical Association on April 1, 2004. The length of the article is 2314 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Dolichonychia in Women with Marfan syndrome.(Original Article)
Author: Philip R. Cohen
Publication: Southern Medical Journal (Refereed)
Date: April 1, 2004
Publisher: Southern Medical Association
Volume: 97Issue: 4Page: 354(5)

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Book Description

Information on many genetic disorders, and the frequent new findings on them, has been extremely difficult to come byuntil now. The Gale Encyclopedia of Genetic Disorders addresses the need for current, hard-to-find facts on emerging discoveries. The two-volume Encyclopedia, presented in a single alphabetical sequence, provides clear, complete information on genetic disorders, including conditions, tests, procedures, treatments and therapies, in articles that are both comprehensive and easy to understand, in language accessible to laypersons. The articles are arranged in a standardized format for quick comparison and ease of use, while non-disorder topics are covered in detail with extended entries. Students will want to consult the Gale Encyclopedia of Genetic Disorders for useful information on a range of well known disorders, including Down Syndrome, Trisomy, Hemophilia and Tourette Syndrome, and rarely seen diseases such as Meckel Syndrome, Neuraminidase Deficiency and Phenylketonuria.

Book Description
This digital document is an article from Pamphlet by: Nat'l Inst. of Arthritis and Musculoskeletal & Skin Diseases, published by National Institute of Allergy and Infectious Diseases on April 1, 1999. The length of the article is 2511 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Questions and Answers About Marfan Syndrome.(Pamphlet)
Publication: Pamphlet by: Nat'l Inst. of Arthritis and Musculoskeletal & Skin Diseases (Pamphlet)
Date: April 1, 1999
Publisher: National Institute of Allergy and Infectious Diseases
Page: 1

Article Type: Pamphlet, Topic Overview

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Book Description
This digital document is an article from Pamphlet by: Nat'l Inst. of Arthritis and Musculoskeletal & Skin Diseases, published by National Institute of Allergy and Infectious Diseases on October 1, 2001. The length of the article is 2981 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Questions and answers about Marfan Syndrome. (Health Topics).(Pamphlet)
Publication: Pamphlet by: Nat'l Inst. of Arthritis and Musculoskeletal & Skin Diseases (Pamphlet)
Date: October 1, 2001
Publisher: National Institute of Allergy and Infectious Diseases
Page: 1(6)

Article Type: Pamphlet, Topic Overview

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Book Description
Marfan Syndrome is a hereditary disorder of connective tissue which primarily affects the eyes, skeleton, blood vessels, and various structures of the heart. Since 1943, when the cardiovascular manifestations of Marfan Syndrome were first described, understanding of its nature, diagnostic tools, and surgical treatment have been remarkably improved. Although the specific surgical procedures have reached an advanced standard and general acceptance, many questions remain unanswered and have given rise to ongoing controversy. Cardiovascular Aspects of Marfan Syndrome presents the advances in understanding the cause and pathogenesis of Marfan Syndrome and its current specific surgical therapy. ... Read more

Book Description

The Gale Encyclopedia of Science is written at a level somewhere between the introductory sources and the highly technical texts currently available. This six-volume set covers all major areas of science and engineering, as well as mathematics and the medical and health sciences, while providing a comprehensive overview of current scientific knowledge and technology. Alphabetically arranged entries provide a user-friendly format that makes the broad scope of information easy to access and decipher. Entries typically describe scientific concepts, provide overviews of scientific areas and, in some cases, define terms.

Book Description
This digital document is an article from Southern Medical Journal, published by Southern Medical Association on July 1, 2002. The length of the article is 2169 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Beals-Hecht syndrome.
Author: Jennifer L. Jones
Publication: Southern Medical Journal (Refereed)
Date: July 1, 2002
Publisher: Southern Medical Association
Volume: 95Issue: 7Page: 753(3)

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