The Marfan Blog

A Journey of Acceptance

Feb 26, 2021 by Kendra DePinto

The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My personal journey with Marfan awareness could be more accurately described as a journey towards Marfan acceptance.

Marfan Moms: The Ultimate Support Group

Feb 23, 2021 by Heather Earnhart

When my daughter, Gabriella, was diagnosed with Marfan syndrome at the age of five our family was forever changed in ways that were unexpected. There was a feeling of relief that finally came with having an answer for Gabriella's health issues. There was a feeling of fear as we stared in the face of this rare condition that we knew absolutely nothing about, and that was now embodied in our daughter. And there was also a feeling of isolation not knowing anyone who understood what this was all really like for us. Our younger child, Nicholas, was only 18 months old at the time. He is the best brother to Gabriella and her number one protector.

Topics: Marfan Awareness, Marfan Community, Quality of Life, Children and Marfan

Broken Bones, But Not Broken

Feb 19, 2021 by Samantha Moliter

I was born the day before my due date and I was perfectly healthy. I was 9lbs 3oz and almost 22in long, which surprised my parents! My parents say I was the perfect baby. I slept through the night and ate like a champ, though I had issues with acid reflux.

Topics: How the Body is Affected, Marfan Awareness, Quality of Life

How It's Going

Feb 12, 2021 by The Marfan Foundation

A Costco Shopper Saved my Life

Feb 9, 2021 by Janna Klostermann

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