1. Marfan Syndrome Forum Describes the author's personal experiences with this Syndrome and asks readers to share their experience Category Health Conditions and Diseases marfan syndrome...... Your page will automatically be added to AOL Hometown. marfan syndromeForum. About Me. I am have me. My History with marfan syndrome. http://hometown.aol.com/bjthaler6/myhomepage/

htmlAdWH('7005340', '120', '30'); htmlAdWH('7002028', '234', '60'); Main Create Edit Help Below is a preview of your home page. Click Modify to make changes to your page. Click Save to save your page and share it with everyone on the Web. Your page will automatically be added to AOL Hometown. Marfan Syndrome Forum About Me I am writing this website to share with the world the fact that I have Marfan Syndrome but it doesn't have me. My History with Marfan Syndrome Among my many mishaps along the way, I also got stung by a Jellyfish, stepped in a pile of Fire ants, and got burned on my stomach. I wonder if this could have caused aditional nerve damage because I already had neurological problems and didn't walk until I was around three years of age. My Hobbies and Interests When I said"I have Marfan's but it doesn't have me" I mean the following. I bowl, I do crafts, and I do photography not to mention this project of building this website. My sister and I organized a Family Cookbook of which I am very proud. My Sophomore year in high school was a disaster and I had to drop out because I was so frustrated I couldn't keep up the normal schedule. But eventually I completed my high school requirements by a Home Schooling correspondence course with my Mother's help. I did very well and later on went on to complete a Bookeeping and Accounting Computer course( again by correspondence)

2. National Marfan Foundation Providing accurate and timely information about the disorder to patients, family members and physicians.Category Health Conditions and Diseases marfan syndrome......marfan syndrome is a genetic disorder of the connective tissue that can affectthe skeletal system, eyes, lungs, blood vessels and heart. marfan syndrome. http://www.marfan.org/

Mission Statement The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives: Disseminate accurate and timely information about this condition to patients, family members and the health care community. Provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care. Support and foster research. more... Marfan Syndrome The Marfan syndrome is a heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. The condition affects both men and women of any race or ethnic group. It is estimated that at least 200,000 people in the United States have the Marfan syndrome or a related connective tissue disorder. more... Learn the benefits of NMF Membership To become a member of the National Marfan Foundation click here! NMF Membership Application Search the NMF Web Site and or Simply type in the word or words you want to search on and click the Search button. You can choose to search for all the words ("AND") or search for any of the words ("OR").

3. Marfan Syndrome: What Is It? Comprehensive guide to this connective tissue disease. http://www.yourgenesyourhealth.org/ygyh/mason/ygyh.html?syndrome=marfan

4. National Marfan Foundation: Marfan Syndrome Fact Sheet marfan syndrome is a genetic disorder of the connective tissue that canaffect the skeletal system, eyes, lungs, blood vessels and heart. http://www.marfan.org/pub/factsheet.html

National Marfan Foundation: Fact Sheet National Marfan Foundation (N M F) 22 Manhasset Avenue Port Washington, NY 11050 (800) 8-MARFAN What is the Marfan syndrome? The Marfan syndrome is a heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. The condition affects both men and women of any race or ethnic group. It is estimated that at least 200,000 people in the United States have the Marfan syndrome or a related connective tissue disorder. What medical problems are associated with the Marfan syndrome? 1. The Cardiovascular System The most serious problems associated with the Marfan syndrome involve the cardiovascular system. The two leaflets of the mitral valve may billow backwards when the heart contracts (mitral valve prolapse). This can lead to leakage of the mitral valve or irregular heart rhythm. In addition, the aorta, the main artery carrying blood away from the heart, is generally wider and more fragile in patients with the Marfan syndrome. This widening is progressive and can cause leakage of the aortic valve or tears (dissection) in the aorta wall. When the aorta becomes greatly widened, or tears, surgical repair is necessary. 2. The Skeleton

5. Marfan Syndrome : Canadian Marfan Association Home Page marfan syndrome is a genetic disorder of the connective tissue that can 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 Articles About the Association Pharaoh Akhenaten ... National and Regional Events (New!) Related Web Sites Emergency Card (New!) Become a Member Grant Proposals Contact Us The Year 2003 Halifax Medical Conference Day and Volunteer Training Session Click here for details Call for Grant Proposals The Canadian Marfan Association is requesting applications for a one year grant for clinical or basic research on the Marfan syndrome. Click here for details If you wish to contact us, please do so using any of the following methods: Canadian Marfan Association Centre Plaza Postal Outlet 128 Queen St. South

6. MEDLINEplus: Marfan Syndrome General/Overviews. marfan syndrome (Mayo Foundation for Medical Education and Research). marfan syndrome (March of Dimes http://www.nlm.nih.gov/medlineplus/marfansyndrome.html

Skip navigation Other health topics: A B C D ... List of All Topics Marfan Syndrome Contents of this page: From the NIH General/Overviews Coping Research ... Teenagers Search MEDLINE for recent research articles on Marfan Syndrome You may also be interested in these MEDLINEplus related pages: Genetics/Birth Defects From the National Institutes of Health Questions and Answers about Marfan Syndrome (National Institute of Arthritis and Musculoskeletal and Skin Diseases) General/Overviews Marfan Syndrome (Mayo Foundation for Medical Education and Research) Marfan Syndrome (March of Dimes Birth Defects Foundation) Also available in: Spanish Coping Physical Education and Activity Guidelines (National Marfan Foundation) Research Marfan Syndrome (National Center for Biotechnology Information) Specific Conditions/Aspects Emergency Diagnosis and Treatment of Aortic Dissection (National Marfan Foundation) Marfan Syndrome (American Heart Association) Marfan Syndrome: An Overview of Related Disorders (National Marfan Foundation) Ocular Concerns (National Marfan Foundation) Orthopedic Concerns (National Marfan Foundation) Directories Support Groups and Contacts (National Marfan Foundation) Journals/Newsletters Connective Issues (National Marfan Foundation) Organizations National Institute of Arthritis and Musculoskeletal and Skin Diseases National Marfan Foundation Teenagers Marfan Syndrome: A Booklet for Teenagers (National Marfan Foundation) Health services in North Carolina Other states coming - learn more The primary NIH organization for research on

7. Marfan Syndrome: Life And Issues Personal site by which describes the pathology and gives a bit of advice.Category Health Conditions and Diseases marfan syndrome......This page outlines my own experience with marfan syndrome, describes someof the pathology, and gives a bit of advice for anyone dealing with it. 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

8. Marfan Includes clinical signs of the disease along with current research, help groups, images of people Category Health Conditions and Diseases marfan syndrome...... Clinical Signs. marfan syndrome was first discovered in 1896 by a French pediatrician,Antoni Bernad Jean Marfan. marfan syndrome is not sexlinked. http://www.mssc.edu/biology/B305/GTS/ss97/marfans/marfans.htm

Marfan Sydrome by Heather Obermann Clinical Signs Marfan Syndrome was first discovered in 1896 by a French pediatrician, Antoni Bernad Jean Marfan. He documented the clinical signs of a five and a half year old girl with long thin limbs. This description of abnormally long limbs has become one of the key phenotypic characteristics of Marfan Syndrome. It is now speculated that Abram Lincoln was also a victim of the disorder. Today it is estimated that this disorder is a part of over 40,000 Americans' lives. With the development of new technologies and surgical techniques, life expectancy has increased more than twenty-five percent since 1972. Inheritance Pattern This gene is named the Fibrillin I Precursor (FBN I). This disorder has variable inheritance with the exception that complete nonpeneterance has not been documented. It is autosomal dominant heterozygous. A minute number of cases are speculated to be autosomal recessive. Marfan Syndrome is not sex-linked. Mechanism of the Disorder Marfan is caused by mutations of the FBN I involve skipping exons that encode the calcium binding epidermal growth factor. Mutations can vary depending on the specific exons skipped. Some skips are a premature termination codon in exon four. One of the mutations affects the synthesis, secretion, and matrix incorporation and deposition of the Fibrillin protein. This creates a dominant negative effect. FBN I is a glycoporotein of the microfibrill. On occasion the microfibrill's formation is disorganized These collagens are a major structural component of connective tissue. Irregularities in the connective tissue are primarily found in the ground substance. They can affect the collagen primary structure and crosslinking as well as hyaluronic acid synthesis.

9. Beal's' Syndrome - Marfan Syndrome Gene Map Read a brief overview of this rare connective tissue disorder as well as links to a gene map for the defect, databases, and publications. of human genes and disorders. Information. National Marfan Foundation. information for physicians, patients and the http://www.ncbi.nlm.nih.gov/disease/Marfan.html

10. A Forum For Worldwide Communication For Marfan Syndrome Organizations A global information center providing links to Organizations around the world.Category Health Conditions and Diseases marfan syndrome......A global information center providing links to marfan syndrome Organizationsaroud the world. International Federation of marfan syndrome Organizations. http://www.marfanworld.org/

International Federation of Marfan Syndrome Organizations Argentinia Australi a Belgium ... United States Hello from IFMSO! It is that time of the year again-2003-and time to send in a "progress report" to The European Marfan Syndrome Network(EMSN). It is always hard to put down on paper what has been happening all year, it always seems daunting, and yet it is so important to communicate with everyone. We all can get a sense of how much work is being done and how much progress is being made when we share our activities together. And what better way to "keep in touch," than to travel the world on the IFMSO web site? In order for me to get an idea of what everyone else is doing, (since I am right in the "thick of it" here in the United States,) I took a tour this morning of the countries listed on IFMSO, and working on the Marfan syndrome. Armed with a large cup of coffee and starting at 6:30 (a.m. in the United States), I logged on to www.Marfanworld.org. What a treat it was to travel over the world and several continents in 1 ½ hours and visit 21 web sites! All of them featuring information on the Marfan syndrome and providing information for people who want to know, and in the language of each specific country!

11. Stanford University Marfan Center Research, testing and care for marfan syndrome and related connective tissue disorders, with a list of FAQs.Category Health Conditions and Diseases marfan syndrome...... surgery. Staff of the Center for marfan syndrome and Related ConnectiveTissue Disorders. Some Questions and Answers about the Center. http://marfan.stanford.edu/

Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders 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 pediatric patients with Marfan syndrome and related connective tissue disorders. Our ultimate goal is to enable our patients to live long productive and fulfilling lives despite the limitations of this genetic disorder. Toward that goal, the members of the center are working to understand how the type of mutation affects the clinical manifestations of Marfan syndrome and on new surgical options such as

12. Marf Kids Club, Marfan Syndrome And Kids Club for kids with marfan syndrome. Features stories, information, and where to get help. http://www.glorysite.com/marfkids.html

Click play button for music fun kid music for kids at heart The Marfan Syndrome Club is a club of hard knocks and tough cookies. The kids in this club belong to a group of kids that were and are talented, brave, smart, compassionate and often look like each other. Marf kids fit in together. Yep, they fit in their own special club that only allows marf kids to join. I have some ''marf kid'' friends that I would like to tell you about. You won't believe what my friends can do! Joey Joey is my hero. He is extremely brave and keeps on with the smiles, jokes, laughter...even when he is hurting. I have seen lots of kids at school and play who think they are tough, but they don't have a clue what tough is till they have faced the obstacles and hurdles that my friend, Joey, has come ''nose to nose'' with and did it with style. From the first moment Joey was born, he has had to face many surgeries, needle sticks and unthinkable tests. It is not easy to know that you might not make it through the next surgery, yet you keep plugging away. Joey can't run and play like the other kids, but that does not slow his mind down one bit. He is sharp and he has a very good sense of humor. While most kids ease their way through life with very little trouble, Joey fights for every accomplishment he makes. Because he has a wonderful support system at home, he has probably accomplished a lot more than most kids can ever expect to with the same hurdles. Now, you can see why Joey is my hero, a ''marf kids club member''.

13. 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 :

14. Marfan Syndrome a CHORUS notecard document about marfan syndrome marfan syndrome. connectivetissue disorder autosomal dominant, 15% sporadic 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 14 March 2001 Medical College of Wisconsin

15. Policy Statement Includes symptoms as well as how to deal with learning one has it.Category Health Conditions and Diseases marfan syndrome...... Health Supervision for Children with marfan syndrome (RE9639). AMERICAN ACADEMYOF PEDIATRICS. The following manifestations occur in marfan syndrome. http://www.aap.org/policy/00978.html

Policy Statement Pediatrics Volume 98, Number 5 November, 1996, p.978-982 Health Supervision for Children with Marfan Syndrome (RE9639) AMERICAN ACADEMY OF PEDIATRICS Committee on Genetics ABSTRACT.This set of guidelines is designed to assist the pediatrician in caring for children with Marfan syndrome confirmed by clinical criteria. Although pediatricians usually first see children with Marfan syndrome during infancy, occasionally they will be called on to advise the pregnant woman who has been informed of the prenatal diagnosis of Marfan syndrome. Therefore, these guidelines offer advice for this situation as well. Marfan syndrome is a heritable disorder of connective tissue characterized by autosomal dominant inheritance and variability in clinical expression. The frequency of this disorder is at least 1 in 10000 in the United States. [1] Approximately one fourth of cases arise by new mutation; the rest are inherited from a parent. The gene ( ) has been mapped to chromosome 15q21.1; [2] the defective protein is fibrillin, an important protein in the structure of connective tissue. Specific mutations that result in defective or decreased fibrillin are being identified in persons with Marfan syndrome. [3-4] There is considerable heterogeneity in the known mutations The major clinical manifestations involve the skeletal, ocular, and cardiovascular systems and the skin. [1] Cardiovascular abnormalities are the most life-threatening features of Marfan syndrome, may be present at birth, manifest during childhood in about 25% of affected children, [5-6] and are progressive in about one third of those. The following manifestations occur in Marfan syndrome. They are divided into major and minor criteria. [7]

16. OcularTimes.Com[Marfan's Syndrome] A quick summary with a focus on the accompanying eye problems. An informative guide to eye disorders Category Health Conditions and Diseases marfan syndrome...... Marfan's Syndrome. Marfan's syndrome is a genetic (inherited) disorderthat affects the body's connective tissue. Connective tissue http://www.geocities.com/ocular_times/marfan.html

17. The Family Village / Library / Marfan Syndrome Offers information about the disease as well as images. Includes clinical signs and the inheritance patterns. http://www.familyvillage.wisc.edu/lib_marf.htm

Marfan Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Personal Accounts ... Search AltaVista for "Marfan Syndrome" Who to Contact National Marfan Foundation 382 Main Street Port Washington, New York 11050 1-800-8-MARFAN 516-883-8040 (fax) E-Mail: staff@marfan.org Web: http://www.marfan.org/ The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives. To disseminate accurate and timely information about this condition to patients, family members and the health care community. To provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care. And to support and foster research. Canadian Marfan Association [CMA] Central Plaza Postal Outlet 128 Queen St. S. PO Box 42257 Mississauga, Ontario, Canada, L5M 4Z0 Fax: [905] 826-2125 E-Mail: info@marfan.ca Web: http://www.marfan.ca/ The Canadian Marfan Association provides accurate, timely information about Marfan Syndrome to help prevent early death and disability, and works to improve the quality of life for Marfan patients in Canada, through comprehensive programs of education, support, and research. They assist patients and their families to live optimally with Marfan Syndrome by forming self-help groups nationally, which will foster improved physical and emotional health and thus enable affected families to seek and follow the most comprehensive health care regime possible.

18. Marfan Syndrome - About Marfan Syndrome What the disease is and includes the impacts on daily life.Category Health Conditions and Diseases marfan syndrome...... Next . marfan syndrome. Edited by Frederick A. Matsen, III, MD and Gregory C.Gardner, MD Last updated March 3, 2003 About marfan syndrome. What is it? http://www.orthop.washington.edu/arthritis/types/marfan/01

Home About Us Clinics Physicians ... Contact Us 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 March 3, 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.

19. Marfan Syndrome Includes definition, problems with blood vessels and cardiac valves, treatment, lifestyle changes, Category Health Conditions and Diseases 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

20. Children's Heart Institute | What Is Marfan Syndrome? Includes information on heart, skeletal, eye, other, causes, risks, management, and Surgery. Assisted Category Health Conditions and Diseases marfan syndrome......What is marfan syndrome? Aortic Valve Regurgitation. How do doctorsdiagnose marfan syndrome? Detailed medical and family history. 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?

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