The Marfan Blog

Finding Commonality at the Marfan Annual Conference

Mar 11, 2019 by Mike Scribner

The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys Dietz, or Ehlers Danlos can be hard to accept. With it comes questions, anger, depression, insecurities, and uncertainties, most of which can be hard to overcome without the proper resources and individuals who understand what you're going through both physically and mentally.

Topics: Marfan Conference, Marfan Community

Awareness Feels Good

Feb 20, 2019 by Maya Brown-Zimmerman

I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I was when I was diagnosed 25 years ago.

Twenty-five years ago, there was no Internet access for them to get answers or to find The Marfan Foundation (which, back then, was the National Marfan Foundation).

FINDING MARFAN: A BREAKTHROUGH IN MENTAL HEALTH

Feb 15, 2019 by Ken M

This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think about it, for a handful of years it’s all about developing, playing, and watching TV. Then, you go to school. 

Topics: Marfan Awareness, Diagnosis, Physical Activity

Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies

Feb 11, 2019 by Sarah E. McMillan

Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot) because you didn’t want to bring up your diagnosis?  Have you ever felt anxious about going to your cardiology appointment and thought “I could put this off for another few months?” You are not alone. 

Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill

Jan 11, 2019 by Sinclaire Schuetze

In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and healthcare as one of the hot-button issues. Pre-existing conditions, in this context, are defined as a medical condition that a person already had before their healthcare benefits went into effect. In general, the Affordable Care Act, implemented in 2014, included that pre-existing conditions must be protected by insurance and insurance companies cannot charge a person more for having a pre-existing condition. The current debate concerns the extent to which the expenses resulting from these conditions should be covered under insurance.

Topics: Health Insurance, Hill Day, Education