The Marfan Blog

Quality of Life January 7, 2021July 22, 2021

Choices

The moment in which a child is born is the most miraculous moment of opportunity. In the moment in...

Community, Healthcare Management, Quality of Life, Surgery December 1, 2020September 14, 2023

Top Five Things I Wish I Knew Before My Aortic Surgery

When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have...

Diagnosis, Healthcare Management, Research November 23, 2020February 24, 2021

Your Questions Answered: Medical Geneticist and Genetic Testing

If you have a connective tissue condition or are seeking an evaluation for one, you know that you...

Quality of Life, Surgery October 22, 2020July 30, 2021

Mental and Physical Recovery from Surgery

This is me y’all. In all my glory. I’m scarred from the belly up. I have been conquering this...

September 21, 2020February 24, 2021

Taking Control

As a softball pitcher, I was used to controlling a game’s tempo. I could choose to take a breath...

Awareness, Diagnosis, Quality of Life September 2, 2020July 21, 2021

Three Things I’ve Learned In 25 Years Since Diagnosis

I was diagnosed with Marfan syndrome at the age of ten during a visit to the Mayo Clinic on...

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Together, We Can Know the Signs and Fight for Victory

Know the signs. Fight for victory.

Together, We Can Know the Signs
and Fight for Victory