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Living with Marfan Syndrome

Most people affected with Marfan syndrome are able to lead productive and satisfying lives. Advances in medical treatment have greatly extended life expectancy. The best hope for living into one’s 70’s or even 80’s lies with attention to recommended medical care and changes to lifestyle. Lifestyle changes are mostly related to limitations in physical activity, both at work and during recreation.

Marfan syndrome has "variable expression," which means symptoms in affected people can range from very mild to quite severe. The reasons for the differences in severity, even among members of the same family, are not well understood.

Since Marfan syndrome is a condition of the connective tissue, and connective tissue is everywhere in the body, many body systems can be affected. Because of the multi-system nature of Marfan syndrome, it is necessary to visit a number of doctors in different medical specialties to receive comprehensive care. Emotional and psychological needs should also be addressed.
 
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