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
Neonatal Marfan Syndrome Fact Sheet
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, […]
Tags: All , Healthcare Professionals
Nervous System in Marfan Syndrome
The nervous system—the brain and spinal column—are surrounded by fluid contained in a membrane called the dura, which is primarily made up of connective tissue. The enlargement of this membrane (and sometimes the presence of cysts) is referred to as dural ectasia. Dural ectasia is present in more than 60 percent of people who have […]
Tags: Marfan Syndrome , Patients & Families
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.