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
Los Ojos de Marfan
El síndrome de Marfan puede afectar a los ojos de muchas maneras. Es por este motivo que las personas con síndrome de Marfan deben consultar a un oftalmólogo (un doctor médico que se especializa en los ojos) para saber si tienen algún problema y también para saber cómo pueden cuidar de sus ojos. He aquí […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
Tags: All , Caregivers, Patients & Families
Patient Care Coordination Instructions
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
Tags: All, VEDS , Healthcare Professionals, 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.