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.
Regelmäßige Bewegung verbessert sowohl das körperliche als auch das emotionale Wohlbefinden und kann sicher in den Alltag von Patienten mit Marfan-Syndrom integriert werden. Daher werden Marfan-Patienten dazu angehalten, Maßnahmen zum Schutz ihrer Gesundheit zu ergreifen, die sie vor der Verschlechterung von Marfan-Merkmalen schützen und vor Erkrankungen bewahren, die ein normaler Teil des Alterungsprozesses sind. Wenn […]
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 […]
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 […]
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.