A few years ago, while writing stories for a healthcare company, I found myself in conversation with Becca Weust, a young woman who had been diagnosed with Marfan syndrome as a child. Becca had faced many complications—heart surgery and brutalizing headaches, a collapsing sternum and deepest exhaustion—and she described them to me, for that was the purpose of my call. But Becca was so intelligent, funny, interesting, and warm, that I did not wish for our conversation to end.
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.
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.