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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Pianificazione Familiare e Gravidanza
Le decisioni in merito alla pianificazione familiare possono essere difficili ed emotivamente molto impegnative quando uno dei futuri genitori soffre di una malattia genetica, come la sindrome di Marfan. Prima di prendere qualsiasi decisione, i genitori devono conoscere le numerose opzioni attualmente disponibili nonché i rischi potenziali per la madre e il bambino. Un consulente […]
Tags: Marfan Syndrome , Patients & Families
Heart and Blood Vessels
People with Marfan syndrome frequently have problems with their heart and blood vessels. Sometimes, these problems are very serious. The most common complication affects the aorta (the main blood vessel carrying blood from the heart to the rest of the body). Heart valves may be affected as well. Less often, blood vessels other than the […]
Tags: Marfan Syndrome , Patients & Families
Emergency Preparedness Kit
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
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.