The Tall Street Journal

Marfan is a disorder that probably all relatively tall people should be aware of, whether it effects them or not. There is a great organization called The National Marfan Foundation (www.marfan.org) and there website with greater detail, but here is a basic run-down from their site recapping the characteristics of Marfan.

Skeleton - People with the Marfan syndrome are typically, but not always, very tall or taller than unaffected people in their family, slender and loose jointed.

Eyes- More than half of all people with the Marfan syndrome experience dislocation of one or both lenses of the eye.

Heart and blood vessels (cardiovascular system) - Most people with the Marfan syndrome have problems associated with the heart and blood vessels.

Nervous system - The brain and spinal cord are surrounded by fluid contained by a membrane called the dura, with age this often weakens and stretches, then begins to weigh on the vertebrae in the lower spine and wear away the bone surrounding the spinal cord.

Skin - Many people with The Marfan syndrome develop stretch marks on their skin, even without any significant weight change or pregnancy.

Lungs - Restrictive lung disease, primarily due to pectus abnormalities and/or scoliosis, occurs in 70 percent of persons with MFS.

If you or anyone you know may fall within these conditions, I'd highly encourage checking out the National Marfan Foundation website (NMF) and ask your healthcare provider about it as well.

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The most dangerous complication of Marfan Syndrome is progressive enlargement of the aorta (the big pipe coming out of the heart that sends blood everywhere in the body but the lungs). If the aorta gets big enough, it can "dissect," or split apart, and kill you. Fortunately, there are ways to detect (echocardiography) and treat (surgical reinforcement) aortic dilation that have extended the expected lifespan for individuals with Marfan Syndrome. Preventing the dilation in the first place has been less successful. For many years, the standard treatment has been to use a type of blood pressure medication (a beta-blocker, such as atenolol) to reduce the heart rate, lower the blood pressure, and (hopefully) reduce the stress on the heart. But that may be about to change. Research funded by the National Marfan Foundation has established that another type of blood pressure medication (losartan, which will soon be available generically) causes "remodeling" of the aortic root. In mice genetically engineered to simulate one of the common causes of Marfan Syndrome, the remodeling is so extensive that the aortic root looks normal. If losartan works the same way in humans as it does in mice (a big "if," by the way), it would be a significant advance in treatment. Currently, there are clinical trials for the losartan versus atenolol trial in several US cities. If you are interested in enrolling in this study, or enrolling a child with the disorder, stroll on over to http://www.clinicaltrials.gov and search on "Marfan."
Thankfully detection has gotten so much better over the years. When I was still a teen I worked with a woman who lost her son due to his aorta rupturing. He was only 22 and it made an impression on me. This is how I got started with the NMF as a charity I support as much as I can.
They say Abraham Lincoln had Marfan's. Don't forget the other tall diseases... Whereas Marfan's is a disorder of collagen synthesis, others are endocrinological like gigantism and acromegaly - Andre the Giant had this and he died of complications related to it.
I've added a separate group to talk about Marfan Syndrome that also includes updated news on information from around the web on updates for Marfan.

http://www.thetallstreetjournal.com/group/marfan
The National Marfan Foundation is one of two official charities supported by Tall Clubs International. Our affiliate clubs raise money individually for them each year, and TCI has a fund raiser for NMF at the annual TCI Convention. Plus,we raised $1,500 for them with our Men-of-TCI 2009 calendar this year. 38 of our bravest guys participated. What fun! it seemed only fair, since we've had a Miss Tall International® all along. Time for the guys to shine!
I myself have Marfan Syndrome ( was diagnosed at age 7 ) and would love to get in contact with some others. I know very very few people that share this condition.
go to nmf.org and join the teens social net work (if that is your age group) or 20-30 something social network, you will learn a lot about marfans and meet lots of people

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