Entscheidungen über die Planung einer Familie können schwierig und emotional sein, wenn eines der zukünftigen Elternteile eine genetische Erkrankung wie das Marfan-Syndrom hat. Bevor eine Entscheidung getroffen wird, sollten sich Eltern über die vielen Möglichkeiten informieren, die heutzutage zur Verfügung stehen, sowie über die möglichen Risiken für Mutter und Kind. Ein genetischer Berater oder die medizinische Fachkraft im Help & Resource Center der Marfan Foundation kann Ihnen Informationen geben und Ihre Optionen mit Ihnen besprechen.
Related Resources
Parent Toolkit
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.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
Beals Syndrome
Beals syndrome is a disorder of connective tissue. The syndrome was first explained by Beals and Hecht in 1971. Features of Beals syndrome are found throughout the body, especially in large joints. While there is no information on the exact prevalence of Beals syndrome, it is estimated that the incidence (number of new cases within […]
Physical Activity Guidelines
Regular exercise improves both physical and emotional well-being and can be incorporated safely into the routine of people with Marfan syndrome. Therefore, they are encouraged to adapt health measures that protect them from Marfan features that can worsen and from medical conditions that are simply part of the aging process. With an early diagnosis, treatment, and lifestyle adaptations, many […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
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