Connective Issues Winter 2025

Teen Voices

Overcoming Challenges 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 wellbeing 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 everyday more and more how to live with having Marfan and being di ff erent. 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 o ff 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 di ff erent 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 Kowall (14, Pennsylvania) Loeys-Dietz Syndrome One big challenge for me was not being able to participate in “normal kid activities.” I always feel di ff erent and like an outcast with other kids because I’m not able to do as much stu ff 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 with feeling 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 di ff erent reasons. I try to focus on the good things.

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