Being a teen isn’t always easy, and teens with genetic aortic and vascular conditions like Marfan, Loeys-Dietz, and VEDS may face unique physical and well-being challenges that can impact their daily lives. Four teens from our community shared how they have overcome or learned how to deal with these challenges. We are grateful for their candid answers, insights, and advice aimed at helping others.
Bailey (13, Illinois)
Marfan Syndrome
Sometimes It’s hard to feel normal looking at the short girls with normal hands and normal shoe sizes. It feels weird being the tallest girl in the room, especially next to guys almost a year older than me and almost a foot shorter than me. I’ve been learning every day more and more how to live with having Marfan and being different. Behind all the embarrassment in me and trying to hide, I’ve realized I really do love it, being the tallest in the room. Amazing parts of having Marfan are the little quirks that maybe you only have, or many others with Marfan have. I have noticeably long fingers, but they just let me show my nails off more noticeably, and my shoe size…well, the bigger, the better, as they say.
Advice for others: I used to struggle with the thought of being different from people my age – I was taller, skinnier, etc. I wanted to shrink and be the shortest one possible, and I wanted to be normal, yet I didn’t see the most important thing in front of me – myself. I’m so glad I’ve truly found her. If you’re just feeling down or scared about the way you look, feel, or act, don’t be. You’re so focused on what you think are the bad things that are actually the best things that make you stand out to everyone.
Sadie (14, Pennsylvania)
Loeys-Dietz Syndrome
One big challenge for me was not being able to participate in “normal kid activities.” I always feel different and like an outcast with other kids because I’m not able to do as much stuff as other kids, and I must take breaks more often than others. That draws attention to me. Another thing is having to miss a lot of school because of doctors’ appointments and getting behind. I recently went into cyber school which has helped because of the flexibility and the fact I can do work at my own pace.
Advice for others: Some ways I have overcome these issues are going to the Foundation’s conferences and Camp Victory to meet more kids who have similar issues as me. This has made me realize that other kids may feel the same way as I do. I have met some of my now best friends through this and am still in contact with them. Meeting new kids helps me feel better about myself and makes me feel like I can fit in more with others. Loeys-Dietz is sometimes bad, but also it can be good for different reasons. I try to focus on the good things.
Ian (17, California)
Marfan Syndrome
Marfan Syndrome makes me very tall and skinny, so one challenge I’ve had to face basically all my life is standing out among my peers. I’m always the tallest person my age, no matter where I go, which always attracts questions that I don’t particularly want to answer. It always annoys me when people think they can ask whatever they want about my height and when every person uncannily manages to have the exact same set of questions – height, dad’s height, basketball. Though this always makes me sigh inwardly, I’ve found talking to myself helps me get over it. A little humor also works quite well – with the help of my mom, sister, and a few friends, I made a set of business cards with answers to the usual questions typed on, handing them out instead of stopping to talk to whoever had asked.
Advice for others: Don’t make a big deal out of it. Even if you do get annoyed, which you often will after a long lifetime of answering the same questions over and over, don’t take it out on whoever’s asking you these questions. Never assume people are actively trying to offend you or make you upset by calling out your height. 95% of people aren’t.
Zoe (14, California)
VEDS
I’ve known I had this condition since I was six years old, but I never had any real symptoms other than actually testing positive for the condition – no bruising and no injuries. I was pretty normal living with VEDS until August 2024, when I had a dissection in my carotid artery, which led me to have a TIA (mini-stroke) at school. My entire life changed, and after that, I wasn’t fine anymore, and I was susceptible to getting seriously hurt. For the first time, I thought about the fact I could die. It’s hard when everything around you seems to move, but you’re still stuck in the same place. I’m not going to lie and say I’m completely recovered; I still struggle sometimes with feelings of despair, and of course, I can’t go on roller coasters, which is even more depressing! But jokes aside I have been moving on even if it’s been slow—I have new friends who have been supporting me and my number one supporter has been my family of course.
Advice for others: If I had any advice for someone going through something similar, I would say that your condition doesn’t change who you are. It might feel like your life is over, but it’s not. You have so much to live for and do not let it stop you.
Want to meet other teens with genetic aortic and vascular conditions? Join us at the Conference, at Camp Victory, or our virtual Teen Talk, held from 7:30 to 9:00 p.m. ET on the third Monday of each month. If you have any questions, reach out to our Teen Program Manager, Dominga Noe, at dnoe@marfan.org.
Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.