The Marfan Blog

Beauty Enthusiast Overcomes Obstacles

Jun 30, 2021 by The Marfan Foundation

Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx, NY,  was diagnosed with Marfan syndrome at the age of 4 when her mother noticed she was looking down at her hands a lot. At an eye doctor appointment, they learned that the connective tissue in her eye was loose, leading her to additional medical evaluations. As a result, the diagnosis of Marfan syndrome was confirmed. Adariel is the first in her family to have the condition. 

Topics: Marfan Awareness, Marfan Community, Diagnosis, Quality of Life, Medical Management, Surgery

Top Five Things I Wish I Knew Before My Aortic Surgery

Dec 1, 2020 by Dominga Noe

When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.

Topics: Marfan Community, Living Successfully, Quality of Life, Healthcare Management, Medical Management, wellness, Surgery

Mental and Physical Recovery from Surgery

Oct 22, 2020 by Elijah Williams


This is me y’all. In all my glory. I’m scarred from the belly up. I have been conquering this thing called Marfan syndrome since birth. 

At the age of 25, I’ve been under more times than I would like to count.

Topics: Quality of Life, Surgery, Mental Health

A Look Back: How Far We’ve Come in Aortic Surgery for Marfan Syndrome

Aug 12, 2020 by Lars G. Svensson, MD, PhD

My interest in Marfan syndrome started many years ago when I was in high school in South Africa. One of my classmates had Marfan. I heard him talk about it, and his words stuck in my mind throughout my medical school and surgical training in the 1970s and 1980s.

Topics: doctors, Medical Management, Education, Surgery