Connective Issues Winter 2025

IanJung (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 o ff end you or make you upset by calling out your height. 95% of people aren’t.

Zoe Patterson (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 a 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: 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.

It might feel like your life is over but it’s not. You have so much to live f or , and do not let it stop you. Want to meet other teens with genetic aortic and vascular conditions? Join us at Conference, Camp Victory, or join our virtual Teen Talk, held at 7:30-9:00 pm ET on the third Monday of each month. Reach out to our Teen Program Manager Dominga Noe at dnoe@marfan.org with any questions.

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Winter 2025