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
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
Topics: Marfan Awareness, Quality of Life, Hill Day, Education
Topics: Quality of Life, self care, Education, wellness, Mental Health
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