The Marfan Blog

Choices

Jan 7, 2021 by Coley Jackson

The moment in which a child is born is the most miraculous moment of opportunity. In the moment in which a human life enters the world, a million choices are laid out. The whole world is truly this tiny human’s oyster. Though for some children many of their choices are taken away and decided on by a higher power, whether this be fate, God, or simply the course of evolution.   

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

Your Questions Answered:  Medical Geneticist and Genetic Testing

Nov 23, 2020 by Dr. Irman Forghani

If you have a connective tissue condition or are seeking an evaluation for one, you know that you need to see a cardiologist to evaluate your heart, an orthopedist to evaluate your bones and joints, and an ophthalmologist to evaluate your eyes. But what is the role of the medical geneticist?

Topics: Diagnosis, Healthcare Management, Medical Management, Genetics, Q&A

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

Taking Control

Sep 21, 2020 by Bridgette Howe

As a softball pitcher, I was used to controlling a game’s tempo. I could choose to take a breath or regroup, or force batters to rush if I was in a groove. I could paint the outside corner or decide on high heat, knowing what needed to be thrown and when. In order to pitch, you have to believe that everything begins and ends on your command.