Andrea Aguiar shares her first-person experiences living with Marfan syndrome in this guest blog.
I’ve known since birth that I have Marfan syndrome. I inherited it from my father, who passed away when I was 6. Marfan has obviously affected my life —but it’s just one part of who I am.
When I was younger, my mom was my advocate. She ensured I had the best care, researched endlessly, and taught me how to stand up for myself. Together, we searched for Marfan specialists and attended Marfan conferences. Now, I’ve become my own champion.
Living with Marfan is an adventure. Along the way, I’ve had jaw and foot surgeries, a collapsed lung, and worked with an endocrinologist to manage my rapid growth. I’ve been relentlessly teased, felt uncomfortable in my own skin, and struggled with what my body couldn’t do or how to fit in. But I’ve also laughed until I cried, found deep friendships, and discovered joy in creativity and connection.
I deal with chronic headaches, back pain, arthritis, and hip pain, and I attend yearly doctor’s appointments so my cardiologist can keep an eye on my enlarged aorta. Every day brings a new challenge, whether it’s fatigue, pain, or just trying to explain to someone why, as a “tall” girl, I still love wearing high heels.
Despite it all, there is joy in life. Marfan has given me more than just medical headaches —it’s taught me resilience, how to advocate, and how to try to find fun and happiness in the moments that matter.
Marfan just happens to be a part of me. I’m also a daughter, sister, friend, and aunt. I’m a designer, a creator, a college graduate and a lover of James Taylor music. I lean on family, friends, faith, medical advancements, hope and a healthy dose of sarcasm.
To anyone else on this or a similar journey—hang in there, keep fighting, and when all else fails, make a joke about it. (Or cry. I do that, too, sometimes. I’m human, after all.)
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To learn more, visit marfan.org
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.