Dear Friend of the Marfan Foundation,

When I look in the mirror, I see a 28-year-old with a long scar on one side and another big scar along her chest. I love those scars—they remind me how I’ve emerged from the hardest times of my life stronger than ever. Thanks to the support of The Marfan Foundation and donors like you, in January I was healthy enough to dance at my wedding—just two months after having open heart surgery to replace my aortic root!

Marfan syndrome was unknown to my family until fifteen years ago when, one day, I—a tall, skinny 13-year-old with an indented chest and spidery “stretch mark” scars on my spine—was undergoing testing for blood clots. My doctor, familiar with The Marfan Foundation’s work, immediately recommended a cardiologist. I was diagnosed with a connective tissue condition related to Marfan syndrome. My parents and I were relieved to hear my aorta was fine, at least at that time.

When I turned 16, my doctors found an aortic enlargement and I was officially diagnosed with Marfan syndrome. In my sophomore year of college, I went home for winter break feeling run down and had no idea I had my first complication of Marfan syndrome: a collapsed lung! Terrified, I was rushed to the hospital to have it repaired…and earned my first surgical scar. My cardiologist urged me to get involved with The Marfan Foundation.

As a caring community, not only are we stronger together, but also we make a difference through research, education, and vital resources for people living with Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes, as well as with other genetic aortic conditions. We have learned a lot, but there is still much to discover! As I’ve experienced, Marfan syndrome is so unpredictable.

Late last year, an echocardiogram showed my aorta had enlarged to a point where I needed immediate open-heart surgery. I was so frightened! But my cardiologist and surgeon are both very involved with The Marfan Foundation—which gave me great confidence. I felt empowered after making the decision to donate a tissue sample from my surgery to help research show why a seemingly “stable” aorta had grown so suddenly.

Just two months after a successful surgery, earning my second scar, Jerrad and I celebrated our wedding as planned. I see the Foundation’s community of supporters when I reflect on my recent successes!

I invite you to join me in our Fight for Victory. Give generously to The Marfan Foundation. Thank you.

Sincerely,

Victoria Falcone-Pawar