Das Marfan-Syndrom ist eine lebensbedrohliche genetisch bedingte Erkrankung des Bindegewebes. Wenn die Anzeichen des Marfan-Syndroms richtig erkannt werden, eine korrekte Diagnose gestellt wird und die Erkrankung richtig behandelt wird, können Patienten mit Marfan-Syndrom ein langes und erfülltes Leben führen.
Related Resources
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
Z-Score Calculator for Children
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.
A Guide to Marfan Syndrome and Related Disorders
This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has […]
Tags: Marfan Syndrome , Patients & Families
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.