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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La Pelle Nella Sindrome di Marfan
Le smagliature della pelle (striae distensae) possono manifestarsi in qualsiasi persona, in particolare a seguito di una crescita rapida durante l’adolescenza, durante la gravidanza o in caso di un importante aumento o calo di peso. Chi soffre di sindrome di Marfan ha una maggiore tendenza a sviluppare smagliature, spesso in giovane età e senza che […]
Tags: Marfan Syndrome , Patients & Families
Referral Letter and Features Chart
We created a template referral letter for you to use to simplify the process when you are referring a patient to a specialist for further evaluation or testing for the diagnosis of Marfan syndrome or a related disorder. The letter makes it easy for you to note the features you observed that raise your suspicion of these disorders.
Tags: All , Healthcare Professionals
Loeys-Dietz Syndrome
Loeys-Dietz syndrome is a genetic disorder of connective tissue. Because connective tissue is found throughout the body, Loeys-Dietz syndrome features can occur in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus. Some Loeys-Dietz syndrome features are easy to see. Others features, such as heart and blood […]
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.