Les personnes atteintes du syndrome de Marfan et de certaines maladies apparentées sont nombreuses à présenter des complications pulmonaires ou des problèmes au niveau de leurs poumons. Si vous souffrez du syndrome de Marfan, il est important que vous consultiez un pneumologue (un médecin spécialiste des poumons) si vous soupçonnez un problème pulmonaire, quel qu’il soit.
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 […]
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.
Genetic testing for mutations in fibrillin-1 (FBN1) and other genes has become an important and reliable option to aid in the diagnosis of Marfan syndrome and related disorders. However, the results of genetic testing for the diagnosis of disorders are not always straightforward. Therefore, working with a medical geneticist (a physician with training in genetics) […]
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