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 suggested he or she be evaluated for Marfan syndrome—what does that entail? Or maybe your new spouse has Marfan syndrome and you want to have children—what are the risks and can you do anything to minimize them? This book aims to address these and many other questions.
Related Resources
Marfan Fashion Resources
Have a hard time finding pants with long enough legs? Can’t find shoes that fit? Your Marfan Foundation Teen Council came up with the idea for this resource just for you! If you have any suggestions of brands/ stores that should be added, please send them to us at staff@marfan.org. This guide provides information about brands […]
Overview of Cardiac Management in Marfan Syndrome
Overview of Cardiac Management in Marfan Syndrome Aortic dissection is the major cause of premature morbidity and mortality in Marfan syndrome. Aortic root aneurysm or dissection and ectopia lentis are cardinal features of Marfan syndrome based on the 2010 Gent nosology. For the full diagnostic criteria, please visit MarfanDX.org. Cardiac features that may be seen […]
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.