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.
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.
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.
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.
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).