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.
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Need-to-Know Information for the Teacher
Marfan syndrome is a life-threatening genetic disorder that causes some physical problems that can interfere with a student’s ability to perform in the classroom without modifications. These physical limitations cause many students living with the disorder to feel isolated and alone. We hope this guide enables educators to: Understand the basics of Marfan syndrome and […]
Tags: All, Marfan Syndrome , Caregivers, Patients & Families
Ehlers-Danlos Syndrome Hypermobility
Ehlers-Danlos Syndrome hypermobility type is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Ehlers-Danlos syndrome hypermobility type is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Ehlers-Danlos […]
Beals Syndrome
Beals syndrome is a disorder of connective tissue. The syndrome was first explained by Beals and Hecht in 1971. Features of Beals syndrome are found throughout the body, especially in large joints. While there is no information on the exact prevalence of Beals syndrome, it is estimated that the incidence (number of new cases within […]
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.