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 genetico o l’infermiere del centro di assistenza e informazioni della Marfan Foundation potranno illustrare le opzioni disponibili e fornire informazioni.
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Bones and Joints in Marfan Syndrome
Marfan syndrome often causes problems in the bones and joints—in fact, these are often the features that first lead a person to suspect Marfan syndrome and seek a diagnosis.These features (called skeletal features) happen when bones grow extra-long or ligaments (connective tissue that holds joints together) become stretchy—like loose rubber bands. What are the common […]
Tags: Marfan Syndrome , Patients & Families
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
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