Connective Issues Spring 2023

Pursuing Your Passion While Living with a Connective

Tissue Condition Living with Marfan syndrome, Loeys-Dietz, VEDS, or another genetic aortic or vascular condition can be challenging, but it doesn’t mean that people need to sideline their passions. Pursuing a passion can provide a sense of purpose and fulfillment as well as act as a form of therapy to help cope with challenges that may come with having one of these conditions. Many in our community have overcome hurdles and pursued their interests despite any limitations, and sometimes it takes creativity and perseverance to find the right fit. Whether it’s art, music, sports, or any other activity, it’s important for those in our community to find ways to engage in their interests while managing their health. The first step is to consult with a healthcare provider to determine if the activity is a good, healthy fit and receive expert advice. Next, it is important to listen to one’s body. This means being aware of how certain activities may a ff ect your health and being willing to make adjustments as needed. Finding a supportive community is also helpful. This can include friends and family who understand the challenges, as well as support groups and online communities like those o ff ered by the Foundation. These networks can provide encouragement, advice, and a sense of belonging.

 Carson Flanagan, 18, Marfan Syndrome “One of my favorite things to do is play golf. My dad is a big golfer, and I have been around the sport from an early age. After having to undergo the Nuss procedure, I decided to discontinue playing basketball and focus strictly on my golf game. Golf has allowed me to continue to participate in a sport for my school as well as allowing my body to remaining active. Golf is something that anyone can try and participate in as long as you take care of yourself. It is a great way to get outdoors with family and friends and enjoy nice days on the course!”  Finnegan Chu, 22, Marfan Syndrome “Storytelling and designing with respect to a character and actor’s truth is ultimately what I’m most passionate about. Marfan being a part of my identity has only opened me up to more perspectives and approaching active collaboration with empathy and understanding. Freelance work (especially theatre) is something that requires a lot of discipline and focus, but also knowing your limits and advocating for yourself. Living with Marfan has only made me more aware of myself and standing firm in my boundaries in many aspects of my life. Knowing yourself and advocating for yourself is always easier said than done, but remaining truthful to myself and my values has kept me in a much more secure place than allowing others to dictate that for me.”

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Marfan.org