The Marfan Blog

College with Loeys-Dietz syndrome

Posted by Peter Donato Mar 10, 2016

blog_peter_college_loeys_dietz.jpgCollege can be one of the most fun periods in a person’s life, yet it can also be one of the most stressful. For someone like me who has Loeys-Dietz syndrome, health concerns can add another layer of stress to the college years. When I had to make my decision on where I wanted to go to college, I not only took into account school size, but I also took into account the closest hospital and where they send students in case of an emergency. I ended up deciding on a small college in Boston that was everything I was looking for and, as an added bonus, is just down the street from where most of my doctors are. Being near my doctors was good for me because the summer before I started my freshman year, I had to have my aortic root replaced. I went to my freshman orientation in the summer and the next day I went to the hospital for my surgery.

College is about taking chances and trying out new things. I knew going into college that I was going to have be a bigger advocate for myself, especially since I was still recovering from aortic surgery. I told my roommate before the school year started and, after I answered a few questions, he had a better understanding of my condition and that I did not want any special treatment. As the school year rolled on, I told more and more people. I realized that, since these were the people I was going to be around every day, they should know in case anything ever happened. I became the manager of the women’s basketball team and joined numerous clubs. To anyone who saw me, I was just another college student. I refuse to allow Loeys-Dietz affect my college career.

Through my two and half years of college, I have learned to keep my head up even when everything might seem like it is going against me. Sometimes it gets tough with a couple papers and exams going on, when I have doctor appointments scattered in the same time period. I may run out of energy a little faster than some of my friends and I might not be able to participate in some campus activities because of my heart, but I still manage to have fun. Whether it be on the bench with the basketball team cheering and screaming or walking around the city with friends. I try not let my condition get in the way of having fun during college. Every once in a while, there will be a day or two where I cannot do what I want because I’m too worn out.

I’ve learned that college is about stepping outside of my comfort zone and, even with Loeys-Dietz, I’ve learned how to get out of my comfort zone without putting my body through something that it wouldn’t be able to handle. Having Loeys-Dietz syndrome doesn’t mean I can’t be a regular college student, it just means that I have to know my limits and have a positive attitude.

Peter Donato, from Framingham, MA, is a junior at Emmanuel College in Boston.

Topics: Marfan Community, Living Successfully, Quality of Life

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