Connective Issues Spring/Summer 2025

“I Feel Strong and Powerful” Finding the Tools to Cope with Marfan Syndrome With more than 30 events across the country each year, the Foundation connects with thousands of community members affected by Marfan syndrome and related conditions. At the HeartWorks Gala in Chicago, Foundation staff had the chance to meet Alaina, an assistant director for an event technology and audio-visual company who was not there as an attendee, but coincidently as an event vendor. After the event, Alaina—who asked us to share that they are nonbinary—connected with the Foundation to share their Marfan story to offer support and encouragement to others.

★ Getting the Most in Life with Marfan “Marfan syndrome has pushed me to get the most in life,” said Alaina. Diagnosed at a young age, Alaina has never let Marfan syndrome define them. Whether it’s playing bass in a band, riding motorcycles, rock climbing, or practicing yoga, they have consistently chosen an active, adventurous lifestyle—balancing living fully with the ongoing physical and emotional challenges that come with their condition. Alaina’s connection to Marfan syndrome began when their father was diagnosed after treatment for a traumatic injury led doctors to recognize the signs in Alaina. Given their height and physical characteristics— like pectus carinatum (where the breastbone and ribs are pushed outward) and long fingers—Alaina’s parents sought medical treatment early on, leading to an early diagnosis. Due to regular monitoring by a pediatrician, cardiologist, and ophthalmologist, Alaina was able to navigate childhood and adolescence without major medical complications. “As long as I could remember, I’ve known that I’ve had Marfan syndrome,” Alaina said. “I’m lucky that my parents were proactive about it.” ★ Facing Medical Obstacles Things changed in 2015, when Alaina experienced their first major medical event, a spontaneous pneumothorax, or collapsed lung caused when air builds up on the chest cavity between the lungs. The following year, Alaina was surprised to learn their aorta had enlarged, signaling the need for surgery in the future, and a few years later, they underwent successful aortic valve surgery. In 2020, another doctor’s visit revealed their aortic valve had expanded again, which would require another surgery. “It was very alarming because I thought it was a routine annual checkup,” they said. “I remember feeling so scared and thinking, ‘Oh, my God, is my body failing?’” The surgery was successful, but a rare complication caused Alaina to have a much longer recovery period as well as ongoing short-term memory issues that they still continue to face today. ★ Prioritizing Mental Health Alaina’s health scares, combined with two separate accidents that resulted in a broken ankle and clavicle, resulted in health anxiety—an issue that kept building, leaving them feeling as though they were crumbling under its weight. Everyday tasks became overwhelming, sometimes even impossible. “At one point, I couldn’t even grocery shop without

 Alaina, left, and their girlfriend

having a panic attack,” they said. “I remember leaving my cart behind, sitting in my car, and trying to breathe. That’s when I realized I needed help.” Therapy helped Alaina turn things around. Through the support of mental health professionals, Alaina learned to manage their anxiety and build self-confidence, allowing their mind to heal. “I used to feel like I wasn’t good enough or like I was a burden,” they said. “These feelings from childhood, combined with my accidents and chronic condition, made me feel a bit insignificant.” Two years of intensive therapy helped them regain control and, now at 31, they continue to apply the tools learned to care for their emotional well-being. “I’ve never been better. I love waking up every day,” they said. “I’m going to work on what I can control, and I have the tools Alaina believes it is important to manage both mental and physical health when living with a condition like Marfan syndrome. “Not just physical labor, but mental stress affects your heart,” they said. “You have to vocalize when you’re overwhelmed, not internalize it, and take the steps to better your mental health.” Looking ahead, Alaina plans to continue embracing life fully while being aware of their limitations. “There are things I can’t do, but I focus on what I bring to the table,” they said. “Even with my chronic condition, I can work, contribute, and help others. I feel strong and powerful.” Alaina encourages others to find a balanced life alongside Marfan syndrome. “Know your limits and respect them, but don’t let them define you”, they said. “And most importantly, love yourself and your body.” Find resources at Marfan.org/mental-health. needed to help myself.” ★ Finding Balance

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