Topics: Quality of Life, self care, Education, wellness, Mental Health
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.
Topics: doctors, Medical Management, Education, Surgery
On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.
Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday
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
At a time when technology infuses our lives in almost every way, it is hard to imagine that the personal computer was invented only 35 years ago. Around that same time, a group of concerned moms and physicians were rallying around a rare condition called Marfan syndrome. Their goal was learning as much as they could to spread awareness. After forming a nonprofit, known today as The Marfan Foundation, they started bringing people together for an annual conference. The first Marfan Annual Conference was held 35 years ago this year.
Topics: Marfan Conference, Marfan Community, Loeys Dietz, Education, Annual Conference