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
Aortic Imagine: Your Questions Answered
Aortic Imagine: Your Questions Answered Dr. Venkat Polsani, Chief of Cardiovascular Imaging at Piedmont Heart Institute in Atlanta, provides an overview of the various types of aortic imaging most commonly used in people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular condition and addresses questions from our community. Webinar recorded April 4, 2021.
Shprintzen-Goldberg Syndrome Fact Sheet
Shprintzen-Goldberg Syndrome is a condition that affects many parts of the body. People who have this syndrome have a combination of unique facial features and skeletal and neurological abnormalities. Shprintzen-Goldberg syndrome is caused by genetic changes (mutations) in a gene that contributes to the formation of connective tissue. How prevalent is Shprintzen-Goldberg syndrome? What are […]
Familial Aortic Aneurysm and Dissection
A thoracic aortic aneurysm is an enlargement of the aorta in the thoracic cavity (chest area), which is the first part of the artery that takes blood away from the heart. A thoracic aortic aneurysm can progressively enlarge over time and doesn’t usually have symptoms. However, if an enlarged aneurysm is not surgically repaired, it […]
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.