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).
This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think about it, for a handful of years it’s all about developing, playing, and watching TV. Then, you go to school.
Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot) because you didn’t want to bring up your diagnosis? Have you ever felt anxious about going to your cardiology appointment and thought “I could put this off for another few months?” You are not alone.