This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has […]
Neonatal Marfan syndrome (also called infantile Marfan syndrome) is a term used to designate a severe presentation of Marfan syndrome that is evident in early infancy and shows rapid progression during childhood. Importantly, there are no specific criteria for use of this term. As a result, it is difficult to make broad generalizations about the diagnosis, […]
Stretch marks on the skin (striae atrophicae) may occur in anyone, particularly as a result of rapid growth during adolescence, pregnancy or marked weight gain or loss. People with Marfan syndrome are prone to develop stretch marks, often at an early age and without weight change. The marks tend to appear in body parts subject […]
Many people with Marfan syndrome and some related disorders experience pulmonary complications, or problems with their lungs. If you have Marfan syndrome, it is important for you to see a pulmonologist (lung doctor) if you suspect that you have any problems with your lungs. What are the common types of lung problems in people with […]
Marfan syndrome often causes problems in the bones and joints—in fact, these are often the features that first lead a person to suspect Marfan syndrome and seek a diagnosis.These features (called skeletal features) happen when bones grow extra-long or ligaments (connective tissue that holds joints together) become stretchy—like loose rubber bands. What are the common […]
People with Marfan syndrome frequently have problems with their heart and blood vessels. Sometimes, these problems are very serious. The most common complication affects the aorta (the main blood vessel carrying blood from the heart to the rest of the body). Heart valves may be affected as well. Less often, blood vessels other than the […]
Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. Knowing the signs of Marfan syndrome, getting a proper diagnosis, and receiving the necessary treatment can enable people with Marfan syndrome to live a long and full life. What are the features of Marfan syndrome? Who has Marfan syndrome? What is life like […]
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