Eastern Michigan University student with Marfan Syndrome dedicated to raising awareness

Seeing a glimpse of the future keeps her going through her challenging days

Eastern Michigan University student with Marfan Syndrome dedicated to raising awareness

YPSILANTI — Grace Meyers, a junior at Eastern Michigan University, was diagnosed with the rare genetic disorder, Marfan Syndrome, at age four. She has emerged as a passionate advocate for raising awareness about the disorder, particularly during February, which was designated as American Heart Month and Marfan Syndrome Awareness Month. 

Marfan Syndrome, a genetic condition affecting connective tissue, affects about 1 in 5,000 individuals. For Meyers, a unique case with a spontaneous mutation, early diagnosis proved pivotal. Despite being the sole family member with the disorder, Meyers feels fortunate that her characteristics caught the attention of her primary doctor.

“A lot of people don't get diagnosed, but I had a smart doctor who recognized my height and long limbs, and he said, ‘I think she has Marfan syndrome,’” said Meyers. “So I went through genetic testing and got an echo of my heart, and I met all the criteria.”

Given Marfan Syndrome's broad impact on various organs, with potential implications for the heart, Meyers emphasizes the critical need for awareness. The disorder, if left undetected, can lead to serious consequences, particularly related to the heart.

“The awareness is so important because those that don't know they have Marfan Syndrome go on with their everyday lives, and maybe play sports and push their bodies, which can cause aortic dissection,” said Meyers. “Many don't even know what an aortic dissection is or the signs of that, which can be fatal.”

Meyers, who manages the disorder through regular echocardiograms and medication, urges proactive health advocacy. She emphasizes the significance of annual heart check-ups for individuals with Marfan Syndrome and encourages everyone to be advocates for their health.

“Know it (Marfan Syndrome) exists and know that taking care of yourself and your heart is important, no matter whether you have the disorder,” said Meyers. “I want people to know how to treat it properly and where to get support and good care.”

Beyond her advocacy, Meyers dedicates her time supporting young people coping with health experiences. With aspirations to become a Child Life Specialist, she utilizes social channels, including a newly launched TikTok page, @graceelizabeth.03, to spread awareness about chronic illness and share her experiences as a college student with Marfan Syndrome.

For more information about the disorder, visit the Marfan Foundation webpage

About Eastern Michigan University
Founded in 1849, Eastern is the second oldest public university in Michigan. It currently serves more than 13,000 students pursuing undergraduate, graduate, specialist, doctoral and certificate degrees in the arts, sciences and professions. In all, more than 300 majors, minors and concentrations are delivered through the University's Colleges of Arts and Sciences; Business; Education; Engineering and Technology; Health and Human Services; and its graduate school. National publications regularly recognize EMU for its excellence, diversity, and commitment to applied education. Visit the University’s rankings and points of pride websites to learn more. For more information about Eastern Michigan University, visit the University's website. To stay up to date on University news, activities and announcements, visit EMU Today.

February 13, 2024

Written by:
Melissa Thrasher

Media Contact:
Melissa Thrasher