Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Overview of Cardiac Management in Marfan Syndrome Aortic dissection is the major cause of premature morbidity and mortality in Marfan syndrome. Aortic root aneurysm or dissection and ectopia lentis are cardinal features of Marfan syndrome based on the 2010 Gent nosology. For the full diagnostic criteria, please visit MarfanDX.org. Cardiac features that may be seen […]
We created a template referral letter for you to use to simplify the process when you are referring a patient to a specialist for further evaluation or testing for the diagnosis of Marfan syndrome or a related disorder. The letter makes it easy for you to note the features you observed that raise your suspicion of these disorders.
Join us in the fight for victory over genetic aortic and vascular conditions and help us create a brighter future for everyone living with these conditions.