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.
Related Resources
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
Ectopia Lentis Syndrome Fact Sheet
In some families, dislocation of the lens of the eye (ectopia lentis) is the predominant feature that passes from generation to generation. Sometimes, this occurs along with some of the skeletal (bone and joint) features of Marfan syndrome. This combination of features is called ectopia lentis syndrome. What are the characteristics of ectopia lentis syndrome? […]
LES ANTÉCÉDENTS MÉDICAUX DE VOTRE FAMILLE
Connaître les antécédents médicaux de votre famille peut vous aider, vous et vos médecins, à déterminer les risques possibles pour votre santé. Vous pouvez peut-être prévenir certaines affections en modifiant votre mode de vie et en faisant des choix de vie plus sains. Vous pouvez également bénéficier d’un traitement précoce pour certaines maladies. Téléchargez cette […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
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