The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
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Tags: Marfan Syndrome , Patients & Families
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
Directives Relatives à L’activité Physique
La pratique régulière d’activités physiques améliore tant le bien-être physique que psychologique et peut s’intégrer en toute sécurité aux habitudes des personnes atteintes du syndrome de Marfan. Ces personnes sont par conséquent encouragées à adapter les mesures sanitaires qui les protègent des caractéristiques de Marfan qui pourraient s’aggraver et des affections qui font simplement partie […]
Tags: Marfan Syndrome , Patients & Families
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