Know the Signs, Fight for Victory

Leaving home for the first time and living with Marfan: “I have truly discovered the power and strength that lives within me.”

Guest blogger Coley Jackson, 21, of Raleigh, NC is a current student at James Madison University. She is a psychology major and a criminal justice minor working towards graduate school and a PhD. She has hopes to be an advocate for Marfan awareness and seeks to be more involved with the Marfan community and share her story.

On a bright, stifling hot day in August of 2021, I stuffed my last suitcase into my
mother’s car. Filled to the brim with every piece of clothing and dorm necessity one could think
of, my family set off for Harrisonburg, Virginia. More specifically, to the beautiful campus of
James Madison University. While certainly emotional about leaving my family and the town I
grew up in, my biggest fears were stemming from the fact that I was saying goodbye to an
incredible community of doctors that had watched over me closely since I was only two months

Coley and her mom

When living with a chronic illness like Marfan Syndrome, your healthcare team becomes like family, and having them within 15 miles of me since birth had been something I had taken
for granted. Until this moment, I had been, unknowingly, in a “Marfan” bubble. I had doctors who had known me for years on end, parents who knew my condition like the back of their hand,
and a school system and friend group that was aware of my needs and abilities. While certainly still a major part of my life, I was blessed with Marfan Syndrome not being my main focus, and I willingly allowed it to be something that my mother took control of and handled more than I did.
Entering college, especially going out of state, I was quickly shocked into realizing that my
healthcare community, my health itself, and my mindset surrounding both was about to become
solely mine. I realized that my responsibility to advocate for myself was about to become more
important than it had ever been before.

Like any other college town, Harrisonburg, VA has a number of hospitals and health care
options that I had to quickly become familiar with. It was certainly scary to walk into these new,
intimidating, doctors’ offices and know that I was not meeting with my childhood doctors who
knew every aspect of my condition and needs. Despite this fear, I knew that I couldn’t stay in the
same place I had always been, which has proven to be one of the biggest feats when it comes to living with Marfan Syndrome.

It’s scary for anyone to change certain aspects of their lives, but especially so when you live with a condition like Marfan Syndrome, where it feels like sudden changes and health scares can happen at any moment. You become obsessed with creating a “safe” and “comfortable” world around you where you can try to prevent any harm. I had mastered this “bubble” in North Carolina, and my choice to attend college, and go out of state, uprooted that in a second. Sitting in doctors’ offices in Harrisonburg, I was forced to learn how to describe my case of Marfan Syndrome without missing a beat. I learned how to prevent the
wrong doctors from gaining access to my care and I learned how to advocate for better and
speedier care when I needed it. I learned to recognize how little many doctors know about
Marfan Syndrome, and how to educate where I can. Most importantly, I learned how to work
past the feeling of being smaller and weaker, and less intelligent than the doctors around me. I
focused instead on garnering the confidence to understand that no one knows my body better
than me, and I am in control. For me, college has certainly not been perfect. On top of the normal
shocks that come with attending undergrad, I’ve had to deal with multiple health scares, some
having to do with Marfan Syndrome, and some not. Despite this, I would not trade my
experience and my choice of college for anything, as I have truly discovered the power and
strength that exists within me.

Marfan Syndrome is not the defining aspect that makes me, me, but it is no use pretending that it is not a huge part of my life, and always will be. Whether I like it or not, my life and my experiences will be affected by Marfan Syndrome, but that doesn’t make me any less
worthy of them. I could have easily stayed in North Carolina, and continued to remain, subconsciously, terrified and weakened by my Marfan Syndrome diagnosis. In attending college and taking the chance in leaving home, I found that my life has a million different paths it can take, and not a single one of them will be stopped by Marfan Syndrome. As a current second
semester junior, my college departure is coming fast, and though it took awhile, and involved
many scary and new changes, I am beginning to see Marfan Syndrome as a beautiful part of this
journey. I could have never found the confidence and faith in myself that now exists if it wasn’t
for being able to gain control of my condition. I am eternally grateful for the ability to share that
Marfan Syndrome did not take over, or hinder, my college experience, and it has only shown me
the power I have and the good I can do when I leave.

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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

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