L’anamnesi familiare è una raccolta di informazioni sanitarie su di te e sui tuoi parenti stretti. Contiene informazioni su disturbi, malattie e problemi di salute che tu e i tuoi figli potreste essere a rischio per ora o in futuro. Più importante, può anche aiutare i tuoi medici a valutare se hai o meno la sindrome di Marfan o un disturbo correlato. Abbiamo creato un pacchetto di storia sanitaria familiare per aiutarti a compilare queste informazioni. Ti invitiamo a compilarlo e portarlo con te dal tuo medico se tu o un altro membro della famiglia state valutando per la sindrome di Marfan o un disturbo correlato. Condividere queste informazioni con i tuoi medici, anche al tuo primo appuntamento, può aiutare ad accelerare la diagnosi.
Related Resources
Loeys-Dietz Syndrome Emergency Alert Card
Download the Loeys-Dietz Syndrome Foundation's Emergency Alert Card, as well as watch a short instructional video we put together to show exactly how to fill out and fold this card.
The Role of Genetic Testing in the Diagnosis of Marfan Syndrome
For years, geneticists and cardiologists have taken pride in their ability to identify individuals with Marfan syndrome based on clinical assessment alone, and have minimized a role for genetic testing in the diagnosis. Once the gene FBN1 was found to be the cause of Marfan syndrome, testing was undertaken to determine the role of genetic testing in […]
Recommended Criteria for Development of a Marfan Clinic
The diagnosis, evaluation, and management of Marfan syndrome and related conditions require health practitioners from multiple disciplines with specialized knowledge, skills, and experience in heritable disorders of connective tissue. Patients and families are best served in clinics with demonstrated interest and expertise in this field.
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