The Marfan Blog

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.

Three Things I’ve Learned In 25 Years Since Diagnosis

Sep 2, 2020 by Megan Price

Caption: Megan, far left, with her family.

I was diagnosed with Marfan syndrome at the age of ten during a visit to the Mayo Clinic on referral from my orthodontist. I’m now in my thirties and working as an attorney in Chicago. Over the last two and a half decades, I’ve learned a lot about navigating life with Marfan Syndrome. These are the top three things I want to share with someone newly diagnosed:

Topics: Marfan Awareness, Diagnosis, Quality of Life

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

Top 10 Benefits of Remote Jobs for those with a Chronic Condition

Jun 2, 2020 by Dominga Noe

When I came to work for the Foundation in 2016, I was the first full-time employee with Marfan Syndrome. Originally, I worked mostly in the office, then part-time at home, and now I am fully remote as I moved to Kansas City, MO back in April. My transition coincided with the work-from-home movement that was made necessary by COVID-19. Like the Foundation, in a time of social distancing, more and more businesses are learning the value of remote jobs for their employees. While many people thrive working in the office, I have experienced first-hand how working from home has so many benefits, especially if you have a chronic condition. I believe that for those of us with chronic conditions, remote work is so much more than just a job perk. It’s a professional lifeline. How so?  Here are my ten benefits to working remote with a chronic condition:

Topics: Quality of Life, Tips, self care, Work from Home, wellness