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February Is National Marfan Syndrome Awareness Month

Built by Amy Passmore on Thursday, February 4th, 2010

February is National Marfan Syndrome Awareness Month. You may have heard of this condition, even if you don’t remember it. In recent years, there has been a lot of information in the news about the possibility that Abraham Lincoln may have had this potentially debilitating condition. This condition is a genetic disorder that affects the body’s connective tissues. It is usually inherited as a dominant trait and can be handed down from either parent. In fact, because the disease IS a dominant trait, if either parent carries the gene for it, their child will likely have the condition.

People with Marfan Syndrome are usually tall like Abraham Lincoln, with long limbs and thin fingers. However, the condition affects more than just a person’s appearance. It can also cause defects of the heart, lungs, spinal cord, skeleton, and hard palate. It can also cause dislocated lenses in the eyes and aortic root dilation. Usually, if a person has long limbs combined with at least two other common complications of the condition, they will be diagnosed with Marfan Syndrome.

There are several structural abnormalities that can occur with this disease, including scoliosis, osteoarthritis, overly flexible joints, protruding sternums, and weak spines.  Nearsightedness is common, as well. Some patients have heart valve problems, such as heart murmurs that may or may not be serious. Some require treatment, some do not. It varies from person to person in severity. With some people it’s mild, and in others, it can be quite severe and debilitating.

Since it’s a genetic condition, it can’t be prevented. All you can do is test for it before birth, so you’ll know what to expect. Then, find out how severe the condition is in your child and get him or her the appropriate treatment. Most people with Marfan Syndrome are able to live normal lives of normal length, though it CAN shorten a person’s lifespan if it is particularly severe. But if someone with the condition can become president, like Abraham Lincoln, then you know there’s hope.

The National Marfan Foundation is dedicated to raising awareness and conducting research on Marfan Syndrome.   For more information visit www.marfan.org or call 800-8-MARFAN.

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