Marfan Syndrome & Related Conditions: Is Being Tall and Flexible Always a Good Thing?

Join Marfan syndrome and related conditions specialist David Liang, M.D., Ph.D. as he discusses what connective tissue conditions there are, how to identify them and the ways in which Hoag is expertly caring for this connective tissue condition community.

[@kimbercole2438]

I have cardiomyopathy with 'completely clear arteries', was diagnosed with marfans in 1991, at 31yo. Had normal echos and normal split lamp tests on eyes from 91 to april 27, 2023 when i was diagnosed with CHF (Cardiomyopathy Heart Failure), and an ejection fraction of 17!! My father had hemochromotosis - and both parents going by skeletal, flexibility & other physical symptoms probably had marfans too. i was tested several times but never when i was 'loading' assuming i had it at all. Can either of these genetic diseases cause active myocarditis leading to left sided cardiomyopathy Heart Failure? I also had two large, bilateral PEs plus severel smaller PEs in my lungs. I am unable to get an echo untill the 1st week of july (the first echo was done 4/27/23, im 63 yo. Desantis is chasing teachers, doctors and hospitals of of Florida so getting tests, Dr. Appointments fast enough to save your life or even help a little is incredibly difficult in florida. Can you answer any of my questions? I will be satisfied- deleriusly happy even, with what ever you come up with. Thank you!

[@HoagHealth]

Hello Kimber, Thank you for your message. We recommend that you consult with your primary care physician, and they will be able to answer your health questions. If you are in need of help finding a physician, you can call our personal service team at 800-400-4624.