Product 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

Product 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.

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.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

Product Description
This up-to-date and comprehensive set of two CD-ROM discs provides a superb collection of documents on the subject of Marfan Syndrome. Marfan syndrome is a disorder that affects connective tissue. Connective tissues are proteins that support skin, bones, blood vessels and other organs. One of these proteins is fibrillin. A problem with the fibrillin gene causes Marfan syndrome. Marfan syndrome can be mild to severe, and the symptoms can vary. People with Marfan syndrome are often very tall, thin and loose jointed. Most people with Marfan syndrome have heart and blood vessel problems, such as a weakness in the aorta or heart valves that leak. They may also have problems with their bones, eyes, skin, nervous system and lungs.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. There is no other reference that is as fast, convenient, and portable - everything you need to know, from the federal sources you trust. This thoroughly researched collection presents vital information from many authoritative sources: Food and Drug Administration (FDA), Centers for Disease Control (CDC), National Institutes of Health (NIH) and the relevant institute for this disease, and others.In addition to the comprehensive disease-specific coverage, this disc set also includes our Medical Encyclopedia, a $19.95 value! The Encyclopedia presents a collection of official documents about a wide range of medical topics, diseases, illnesses, health and wellness. There is vital information from the National Institutes of Health (NIH), the Centers for Disease Control (CDC), National Cancer Institute, and more. Topics covered include: major diseases, including cancer, heart and vascular disease, stroke, blood diseases and disorders, lung diseases, and neurological disorders such as dementia and epilepsy * CDC Health Topics A to Z, Foodborne Illnesses, Infants and Children, Injuries, Occupational Health, Older Adults, Women * CDC Travelers' Health - Destinations, Vaccinations, Diseases, Mosquito, Tick, Food, Water, Clinics, Yellow Book, Children, Airplanes, Cruise Ships, Special Needs, Relief Workers * Dietary Guidelines * NIH A to Z from abnormalities to X-rays.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 67 of the best sites for medical information! Built-in weblinks let you quickly check for the latest clinical updates directly from the government and the best commercial portals, news sites, reference/textbook/non-commercial portals, and health organizations. ... Read more

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

Product 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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Product 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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Product 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

Product Description
This digital document is an article from Gale Encyclopedia of Medicine, 3rd ed., brought to you by Gale®, a part of Cengage Learning, a world leader in e-research and educational publishing for libraries, schools and businesses.The length of the article is 2169 words.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.The third edition of this authoritative, comprehensive, in-depth medical guide features information on medical topics in language accessible to adult laypersons. 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. ... Read more

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The article is excerpted fromGale Encyclopedia of Medicine.

Consultthe second edition of this authoritative, comprehensive, in-depthmedical guide for information on more than 1,700 medical topics inlanguage accessible to adult laypersons. Presented in a singlealphabetical sequence, articles range in length from one or twoparagraphs 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 muchmore. This second edition includes more than 200 new entries, 300updated entries, approximately 650 color images and illustrations, anda comprehensive subject index. New features include biographical andhistorical 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 thatproduces the condition; any risk factors that increase susceptibilityto the condition; signs and symptoms of the disease
• Diagnosis -- overview of procedures and tests used todiagnose the condition; how the test is done; who should be tested andwhen; time required; cost; whether it's typically covered by insurance
• Treatments -- overview of conventional methods of care ormanagement of the condition, such as drugs, surgeries, physicaltherapy, 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

Test/treatment articles contain some or all of the following sections:

• Definitions -- brief dictionary-style definition of the test/treatment
• Purposes -- why and when this test/treatment is prescribed
• Precautions -- when this test/treatment should not be prescribed
• Descriptions -- overview of the test/treatment including cost,length of time required, procedures followed, whether typically coveredby insurance
• Preparation -- pre-test treatment procedures, if any
• Aftercare -- post-test treatment procedures, if any
• Risks -- any complications/side effects commonly associated with the test/treatment
• Normal results -- for tests, describes the normal values; for treatments, describes the anticipated outcomes
• Abnormal results -- defines abnormal test values

Published/Released: December 2001

Product 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.

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Purchase includes free access to book updates online and a free trial membership in the publisher's book club where you can select from more than a million books without charge. Excerpt: Jonathan Larson (February 4, 1960 January 25, 1996) was an American composer and playwright noted for the serious social issues of multiculturalism, addiction, homophobia, and AIDS explored in his work. Typical examples of his use of these themes are found in his works, Rent and tick, tick... BOOM!. He received two posthumous Tony Awards and a posthumous Pulitzer Prize for Drama for the opera Rent. Larson was born to Jewish parents, Allan and Nanette Larson, in White Plains, New York. He was exposed to the performing arts, especially music and theatre from an early age, as he played the trumpet, tuba, was involved in his school's choir, and took formal piano lessons. His early musical influences were rock musicians such as Elton John, The Who, and Billy Joel, as well as the classic composers of musical theatre, especially Stephen Sondheim. Larson was also involved in acting in high school, performing in lead roles in various productions at White Plains High School. Larson attended Adelphi University in Garden City, New York with a four-year scholarship as an acting Academic major, in addition to performing in numerous plays and musical theatre. During his college years, he began music composition, composing music first for small student productions, called cabarets, and later the score to a musical entitled Libro de Buen Amor, written by the department head, Jacques Burdick. Burdick functioned as Larson's mentor during his college education. After graduating with a Bachelor of Fine Arts, he participated in a summer stock theatre program at The Barn Theatre in Augusta, Michigan, as a piano player, the result of which was the earning of an Equity Card for membership in the Actors' Equity Association. Larson moved to a loft with no heat on the f... More: http://booksllc.net/?id=296337 ... Read more

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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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Information on many genetic disorders, and the frequent new findings on them, has been extremely difficult to come by—until 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.

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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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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

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Chapters: Rheumatoid Arthritis, Systemic Scleroderma, Marfan Syndrome, Hernia, Peritonitis, Scar, Ehlers-Danlos Syndrome, Necrotizing Fasciitis, Fibromyalgia, Systemic Lupus Erythematosus, Pneumothorax, Pleurisy, Wegener's Granulomatosis, Hypermobility, Dermatomyositis, Adhesive Capsulitis of Shoulder, Compartment Syndrome, Plantar Fasciitis, Pleural Effusion, Congenital Diaphragmatic Hernia, Cellulitis, Cardiac Tamponade, Dupuytren's Contracture, Polyarteritis Nodosa, Sprain, Pericarditis, Adhesion, Constrictive Pericarditis, Calcific Tendinitis, Greater Trochanteric Pain Syndrome, Hemothorax, Pericardial Effusion, Myofascial Pain Syndrome, Mollaret's Meningitis, Hemopneumothorax, Eosinophilic Fasciitis, Mixed Connective Tissue Disease, Pneumoperitoneum, Nodular Fasciitis, Parapneumonic Effusion, Myopericarditis. Source: Wikipedia. Pages: 304. Not illustrated. Free updates online. Purchase includes a free trial membership in the publisher's book club where you can select from more than a million books without charge. Excerpt: Fibromyalgia (new lat., fibro-, fibrous tissues, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain; also referred to as FM or FMS) is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms. Fibromyalgia is estimated to affect 2-4...More: http://booksllc.net/?id=318049 ... Read more