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 Syndrome: The Basic Facts
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 […]
Tags: Marfan Syndrome , Patients & Families
Know the Signs of an Aortic Aneurysm and Dissection
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
Marfan DX
We compiled the 2010 Revised Ghent Nosology for Marfan Syndrome into a simple diagnostic tool to put the updated criteria right in your hands. It is designed for all healthcare professionals involved in the diagnosis of Marfan syndrome, including general practitioners and specialists such as pediatricians, cardiologists, orthopedists, ophthalmologists, and geneticists.
Tags: All , Healthcare Professionals
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.