1. Marfan Syndrome: Life And Issues This page outlines my own experience with marfan syndrome, describes some of the pathology, and gives a bit of advice for anyone dealing with it. near it. I'm just your average Jane with Marfan http://www.io.com/~cortese/marfan

Choose your subject: Welcome Hotlist Helpful Links My Cats Comics Patriotic Stuff Women in Afghanistan Fire Horses Handguns Scott Joplin Crafts Marfan Syndrome Lefthandedness Mailing Lists My Resume Mail Me Please be aware that I am not a doctor or anywhere near it. I'm just your average Jane with Marfan Syndrome. This page is here to educate people in general as to how to recognize Marfan, what it's like to live with it, to provide me with a bit of a soapbox, and to tell you, Gentle Reader, where you can go to learn more. If you suspect that you or someone you know has Marfan Syndrome, do not write to me describing yourself and asking me if you have it. In order to be diagnosed, you must be examined by a doctor who is very familiar with the disorder. Not only can I not do that, it isn't possible for ANYONE to diagnose you without seeing you. You must see a Marfan doctor in order to be diagnosed, and you can find out more about doctors and support groups at the National Marfan Foundation . If you write to me asking if you have it, I'll just delete your mail without replying since I've got a Yugo's chance in the Daytona 500 of being able to tell you anything constructive. Also, for any students reading this who want to write to me and ask me for "everything you know about Marfan Syndrome" and "any personal experiences you have had with it" it's all here. Just read this. Feel free to

2. Stanford University Marfan Center Stanford University. Center for marfan syndrome Related Connective Tissue Disorders. History and Mission. The Stanford University Marfan Clinic was established in 1988 by Dr. D. marfan syndrome http://marfan.stanford.edu/

Stanford University Center for Marfan Syndrome History and Mission The Stanford University Marfan Clinic was established in 1988 by Dr. D. Craig Miller at the urging of the local chapter of the National Marfan Foundation based upon the perceived need to establish a specialized care center in the western United States. At the fifth anniversary, the name was changed to the Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders to reflect the broader mission of the Center. Marfan syndrome was initially described in 1896 and is now recognized as a genetic disorder of connective tissue that affects the bones, joints, eyes, blood vessels and the heart. Recent studies in molecular genetics have identified the fibrillin gene product as the defective connective tissue protein that causes Marfan syndrome. Marfan syndrome affects approximately 1 per 5,000 individuals throughout the world including both genders as well as all races and ethnic groups. Prior to innovations in the medical and surgical management of this disease, most patients died of cardiovascular complications by the age of 50. The central mission of the Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders is to be an integrated, multi-disciplinary unit that provides comprehensive, cost-effective, state-of-the-art diagnostic evaluation and care for adult and

3. Health Supervision For Children With Marfan Syndrome Includes symptoms as well as how to deal with learning one has it. http://www.aap.org/policy/00978.html

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4. The National Marfan Foundation Marfan Foundation is dedicated to saving lives, and improving the quality of lifefor individuals and families affected by the marfan syndrome and related http://www.marfan.org/

dqmcodebase = "/nmf/javascript/" //script folder location The National Marfan Foundation is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders. Together with our National Volunteer Network , including Chapters, Support Groups and other local contacts , we disseminate accurate information, provide support and foster research. Privacy Statement News From The National Marfan Foundation View Newsletter The National Marfan Foundation is re-launching its web site. Opens New Port Washington Headquarters. First Permanent Positive Exposure Display on Long Island. Press Room New Resource for the Spanish-speaking Marfan Population The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has just released a web-only Spanish language resource called El Sindrome de Marfan.

5. Marfan Syndrome marfan syndrome is a connective tissue disorder, so affects many structures,including the skeleton, lungs, eyes, heart and blood vessels. http://www.ncbi.nlm.nih.gov/disease/Marfan.html

This Genes and Disease page has been moved to: Please update your bookmarks. If you are not automatically transported to the new page after 15 seconds, click on this link Genome View on chromosome 15 Databases PubMed the literature LocusLink collection of gene-related information OMIM catalog of human genes and disorders Information National Marfan Foundation information for physicians, patients and the public MARFAN SYNDROME is a connective tissue disorder, so affects many structures, including the skeleton, lungs, eyes, heart and blood vessels. The disease is characterized by unusually long limbs, and is believed to have affected Abraham Lincoln. Marfan syndrome is an autosomal dominant disorder that has been linked to the FBN1 gene on chromosome 15. FBN1 encodes a protein called fibrillin, which is essential for the formation of elastic fibres found in connective tissue. Without the structural support provided by fibrillin, many tissues are weakened, which can have severe consequences, for example, ruptures in the walls of major arteries. Beta blockers have been used to control some of the cardiovascular symptoms of Marfan syndrome; however, they are not effective against the skeletal and ocular problems, which can also be serious. A related disease has been found in mice, and it is hoped that the study of mouse fibrillin synthesis and secretion, and connective tissue formation, will further our understanding Marfan syndrome in humans.

6. Marfan Syndrome Feedback. Search. marfan syndrome. connectivetissue disorder autosomal dominant, 15% sporadic More info marfan syndrome OMIMCharles E. Kahn, Jr http://chorus.rad.mcw.edu/doc/00246.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system Feedback Search Marfan syndrome connective-tissue disorder: autosomal dominant, 15% sporadic cardiovascular system (prob. cause of death in 93%) aortic aneurysm (mostly ascending) dilatation of aortic sinuses aortic dissection coarctation musculoskeletal system tall stature, long limbs arachnodactyly lax joints spine scoliosis (60%) / kyphosis / pectus dural ectasia eye lens subluxation Cf: homocystinuria More info: Marfan syndrome [OMIM] Charles E. Kahn, Jr., MD - 24 November 1995 Last updated 26 May 2004 Medical College of Wisconsin

7. Marfan Syndrome The marfan syndrome is a connective tissue disorder. In the marfan syndrome,the chemical makeup of the connective tissue isn t normal. http://www.americanheart.org/presenter.jhtml?identifier=4672

8. Marfan Syndrome marfan syndrome information and resources, links to national and international support groups, clinics with genetic counselors and geneticists Marfan Association, includes Similar Disorders to marfan syndrome Beals (Congenital individual with marfan syndrome. marfan syndrome Web Site, individual with marfan syndrome http://www.kumc.edu/gec/support/marfan.html

Marfan Syndrome The National Marfan Foundation (NMF 382 Main St Port Washington, NY 11050 Phone: (800) 8-MARFAN E-Mail: staff@marfan.org Web site: http://www.marfan.org/ Physical Education and Activity Guidelines Resource Manuel Canadian Marfan Association , includes Similar Disorders to Marfan Syndrome [Beals Congenital Contractual Arachnodactyly), Ehlers Danlos, Hajdu Cheney] Marfan Association United Kingdom Contactgroep Marfan Nederland (Dutch) Marfan Network Japan Pomagamy chorym z Zespolem Marfana i ich rodzinom , Marfan Association Poland Other Sites: Stanford University Center for Marfan Syndrome Adult Congenital Heart Network , Canadian Adult Congenital Heart Network, Toronto Congenital Cardiac Centre for Adults, and International Society Of Adult Congenital Cardiac Disease The Humble Hands individual with Marfan Syndrome Marfan Syndrome Web Site , individual with Marfan Syndrome Clinical Operational Research Unit , University College London, includes Marfan Syndrome Survey, TYWChow , and Timing of Elective Aortic Root Replacement in the Marfan Syndrome: Computerized decision support alt.support.marfan

9. Marfan Syndrome - About Marfan Syndrome estimated that about one in 10 000 people has marfan syndrome. This means it affects over 20 000 People who have marfan syndrome in their family should meet with their http://www.orthop.washington.edu/arthritis/types/marfan/01

Home About Us Clinics Physicians ... Contact Us A program of Table of contents About Marfan syndrome What is it? Incidence and risk factors Curability ... View article with questions External links National Marfan Foundation March of Dimes [Top] Marfan Syndrome Edited by Frederick A. Matsen III, M.D. and Gregory C. Gardner, M.D. Last updated June 7, 2003 About Marfan syndrome What is it? Marfan syndrome is a rare hereditary disorder that causes connective tissue to be weaker than normal. Connective tissue is the most abundant tissue in the body. It supports and protects various other tissues, is a vital component of all organs in the body, and provides strength and elasticity to blood vessels. Therefore, a disorder of connective tissue can cause a variety of abnormal conditions. For people with Marfan syndrome, weak connective tissue causes problems of the skin, muscles, ligaments, heart, eyes, blood vessels, and bones. Incidence and risk factors It is estimated that about one in 10,000 people has Marfan syndrome. This means it affects over 20,000 people in the United States alone. Early diagnosis and treatment allows most individuals to live relatively normal, fulfilling lives, and may prevent more serious problems. People who have Marfan syndrome in their family should meet with their doctors, genetic counselors, the National Marfan Foundation , and others who have Marfan syndrome to learn all they can about the disorder and how to manage it effectively.

10. A Forum For Worldwide Communication For Marfan Syndrome Organizations A global information center providing links to Organizations around the world. http://www.marfanworld.org/

International Federation of Marfan Syndrome Organizations NEW DOWNLOADS: IFMSO Membership Form IFMSO Fact Sheet Request for Grant Proposals 2004 NMF ... United States Hello from IFMSO! IFMSO Mission The International Federation of Marfan Syndrome Organizations (IFMSO) was formally founded in 1992 at the Second International Symposium on the Marfan Syndrome in San Francisco, California. The purposes of IFMSO are to: facilitate international communication among medical professionals and the general public. Suggestions on how to use this website. The IFMSO website provides information relating to the International Federation of Marfan Syndrome Organizations (IFMSO) and the Marfan syndrome which you may access by clicking on to the sites indicated on the left hand side of this "Home" page under each countries' name. You may also "link" on to the IFMSO member websites by visiting our Members page (box on the left hand side of the IMFSO home page). Linking to the websites of the different IFMSO member countries will provide information on the Marfan syndrome in the language of that country. You can also access the various "linked" websites by visiting our Members page.

11. MARFAN'S SYNDROME Includes a survey for study and links to useful sites. http://www.ucl.ac.uk/~ucahywc/

Clinical Operational Research Unit University College London The timing of Elective Aortic Root Replacement in the Marfan's Syndrome: Computerized decision support Introduction to the project International Marfan Syndrome Survey (English) Questionario di studio sulla Sindrome di Marfan (Versione Italiana) Cuestionario (Español) Other useful links: Clinical Operational Research Unit, University College London Marfan Association UK National Marfan Foundation (USA) Canadian Marfan Association ... St. George's Hospital Medical School For further information, please contact Dr Terence Chow on ucahywc@ucl.ac.uk This Marfan Syndrome Info Ring site is owned by Dr Terence Chow Want to join the Marfan Syndrome Info Ring? Skip Prev Prev Next ... List Sites This project is funded by the British Heart Foundation Tel: ++44 0207 935 0185 Fax: ++44 0207 486 5820 E-mail: http://www.bhf.org.uk/ 14 Fitzhardinge street, London W1H 4DH, UK You are visitor number :

12. Marfan Syndrome: Does Diet Play A Role? Explores the idea that the disease is affected not by the fibrillin gene, but by one's diet. Also examines this role in other disorders. http://www.ctds.info/marfan.html

Con nective Tissue Disorder Home Search Site Map ... Links Marfan Syndrome Does Diet Play A Role? Contents: Fibrillin Genes and Marfan Syndrome Marfan Syndrome and Possible Links to Nutrition Read my Fibrillin Genes and Marfan Syndrome Most researchers say that Marfan syndrome (MFS) is caused by a mutation in the gene for fibrillin (specifically the fibrillin-1, or FBN1 gene). However, recent studies show that most people with Marfan syndrome (72%) have not been found to have fibrillin mutations. Recent studies also show that many people who do not have the disorder also have fibrillin mutations. Click here to read my section on interesting fibrillin research and Marfan syndrome. Return to top Marfan Syndrome and Possible Links to Nutrition There are many symptoms of Marfan syndrome that are identical to symptoms of nutritional deficiencies. Is this a random coincidence, or could genetic predispositions to be low in certain nutrients be factors for people with Marfan syndrome? Homocystinuria has many identical features to Marfan syndrome including the Marfanoid habitus, dislocated lenses and

13. Children's Heart Institute | What Is Marfan Syndrome? Includes information on heart, skeletal, eye, other, causes, risks, management, and Surgery. Assisted by many graphics and a tour to help understand the disease. http://www.childrenheartinstitute.org/educate/marfan/marfan.htm

What is Marfan Syndrome? Heart Skeletal Eye Other Causes ... Surgery What is Marfan Syndrome Marfan Syndrome is a genetic disorder, which may affect; the heart and blood vessels ( Cardiovascular System ), Spine, Chest, and joints ( Skeletal System ) and the Eyes and their supporting tissue ( Ocular System The heart abnormalities associated with this condition are however the most life-threatening and the most important to detect. The major heart abnormality is weakening of the root of the aorta which leads to dilation of that root and, at extremes, aneurysm formation and rupture. Normal Body Marfan Syndrome Cardiovascular Abnormalities: (heart and blood vessels) Mitral Valve Prolapse Mitral regurgitation Dilation of the aortic root Aortic Valve Regurgitation A murmur of aortic regurgitation, a diastolic murmur indicating a leaking aortic valve Aneurysm of the aorta and Aortic dissection Aortic Valve Regurgitation How do doctors diagnose Marfan Syndrome?

14. Marfan Syndrome An overview including terms and books associated with Marfan's. http://www.ehendrick.org/healthy/000875.htm

MAIN SEARCH INDEX Marfan syndrome Definition Description Causes and symptoms Diagnosis ... Resources Definition Marfan syndrome is an inherited disorder of the connective tissue that causes abnormalities of the patient's eyes, cardiovascular system, and musculoskeletal system. It is named for the French pediatrician, Antoine Marfan (1858-1942), who first described it in 1896. Marfan syndrome is sometimes called arachnodactyly, which means "spider-like fingers" in Greek, since one of the characteristic signs of the disease is disproportionately long fingers and toes. It is estimated that one person in every 3000-5000 has Marfan syndrome, or about 50,000 people in the United States. Marfan syndrome is one of the more common inheritable disorders. Description Marfan syndrome affects three major organ systems of the body: the heart and circulatory system, the bones and muscles, and the eyes. The genetic mutation responsible for Marfan was discovered in 1991. It affects the body's production of fibrillin, which is a protein that is an important part of connective tissue. Fibrillin is the primary component of the microfibrils that allow tissues to stretch repeatedly without weakening. Because the patient's fibrillin is abnormal, his or her connective tissues are looser than usual, which weakens or damages the support structures of the entire body. The most common external signs associated with Marfan syndrome include excessively long arms and legs, with the patient's arm span being greater than his or her height. The fingers and toes may be long and slender, with loose joints that can be bent beyond their normal limits. This unusual flexibility is called hypermobility. The patient's face may also be long and narrow, and he or she may have a noticeable curvature of the spine. It is important to note, however, that Marfan patients vary widely in the external signs of their disorder and in their severity; even two patients from the same family may look quite different. Most of the external features of Marfan syndrome become more pronounced as the patient gets older, so that diagnosis of the disorder is often easier in adults than in children. In many cases, the patient may have few or very minor outward signs of the disorder, and the diagnosis may be missed until the patient develops vision problems or cardiac symptoms.

15. Marfan Syndrome: What Is It? Comprehensive guide to this connective tissue disease. http://www.ygyh.org/marfan/whatisit.htm

Concept 1 : Children resemble their parents. Learn how Mendel worked out inheritance in pea plants. Concept 10 : Chromosomes carry genes. Find out how genes are arranged on chromosomes.

16. The National Marfan Foundation Printer Version About marfan syndrome What is marfan syndrome? The Marfansyndrome is a heritable condition that affects the connective tissue. http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2

17. Marfan Syndrome Search. This book All books PubMed. Genes and Disease PDF DocumentSkin and Connective Tissue marfan syndrome Cn3D marfan syndrome http://www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.sect

18. Marfan Syndrome Includes clinical signs of the disease along with current research, help groups, images of people affected by the disorder and a fair amount of references. http://www.mssc.edu/biology/B305/GTS/ss97/marfans/marfans.htm

19. Marfan Syndrome - Learn More From MedlinePlus Find the latest news stories, overviews, research and more on marfan syndrome from MedlinePlus, the National Library of Medicine's consumer health site. http://rdre1.inktomi.com/click?u=http://www.nlm.nih.gov/medlineplus/marfansyndro

20. Marfan Syndrome : Canadian Marfan Association Home Page Learn more about marfan syndrome, the heritable disorder of the connective. Links2GoKey Resource, Chosen as a Links 2 Go Key Resource, marfan syndrome Topic. http://www.marfan.ca/

... dedicated to preventing the early death and disability, and improve the quality of life for Marfan patients in Canada, through comprehensive programs of... Education... Support... Research... Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeletal system, eyes, lungs, blood vessels and heart. About Marfan Syndrome Become a Member About the Association Products ... Hbc Rewards Community Program (New!) National and Regional Events (New!) CMA Brochures Order Form (New!) Related Web Sites Privacy Policy Articles Contact Us “Toronto Marfan Health Awareness Day” The Toronto Board of Trade – Airport Centre Saturday, June 26, 2004 Learn more about Marfan syndrome, the heritable disorder of the connective tissue that affects men and women of any race or ethnic group. For the “Toronto Marfan Health Awareness Day” registration form, please click here using Adobe® Acrobat® Reader®. Click here to review the day's Agenda If you do not have Adobe® Acrobat® Reader® , click here to download it.

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