The Marfan Blog

A Costco Shopper Saved my Life

Feb 9, 2021 by Janna Klostermann

Topics: Marfan Awareness, Quality of Life, Hill Day, Education

Suffering in Silence No More

Jan 27, 2021 by Destiny Lomonte

Topics: Quality of Life, self care, Education, wellness, Mental Health

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

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