Know the Signs, Fight for Victory
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
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.
El Síndrome de Marfan es un trastorno del tejido conectivo. El tejido conectivo es el que hace que todas las partes del cuerpo se mantengan en su lugar y ayuda a controlar el crecimiento del cuerpo. Como el tejido conectivo se encuentra en todo el cuerpo, las características del Síndrome de Marfan pueden ocurrir en […]
For patients up to 25 years of age: utilizing systole, inner to inner edge measurement of the sinuses of valsalva according to personal communication from Steve Colan.
Different methods are used for aortic root dilatation in different publications (eg.diastolic versus systolic measurement, inner to inner or leading edge to leading edge diameters).
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