My interest in Marfan syndrome started many years ago when I was in high school in South Africa. One of my classmates had Marfan. I heard him talk about it, and his words stuck in my mind throughout my medical school and surgical training in the 1970s and 1980s.
For parents of a child with a connective tissue condition, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child have to “break in” a new teacher and sometimes a new school and a new school nurse. You want to ensure that your child will be safe at school and empowered to achieve academically – and that the school can handle any potential emergency medical situation.
Topics: Medical Management, Education, school
The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.
Topics: Healthcare Management, Medical Management, Backpack Health
Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.
As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex. It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.
Topics: Marfan Community, Research, Tips, Healthcare Management, Medical Management
The Marfan Foundation announced that, starting today, it is making a new app available for free to people with Marfan and related disorders – and their families – to securely manage their medical records.
Topics: Living Successfully, Quality of Life, Healthcare Management, Medical Management
