Today we’d like to introduce you to Grace Meyers.
Hi Grace, it’s an honor to have you on the platform. Thanks for taking the time to share your story with us – to start maybe you can share some of your backstory with our readers?
Hi, my name is Grace Meyers. I am 21 years old, and at the age of 4, I was diagnosed with Marfan Syndrome. Marfan Syndrome is a rare connective tissue disorder that majorly affects the heart, eyes, and skeletal system, but the entire body is affected due to weak connective tissue that holds everything together. It is a genetic condition, but I am the first one in my family to have Marfan, meaning I am a spontaneous mutation. Growing up, I always knew I was different. I hadn’t met anyone else with Marfan Syndrome. In 2014, I attended my first conference with The Marfan Foundation. I got to meet other kids like me. Since then, I have gone through major medical issues such as spinal fluid leaks, pectus excavatum repair, and more complications and diagnoses. I desperately wanted to find people like me to connect with and relate to. I joined social media and got more deeply involved with The Marfan Foundation in 2020 by joining their Teen Council. I had many opportunities with them to participate in advocacy work such as Capitol Hill lobbying, being a guest on a podcast, features in news letters, performing speeches, being the community chair for local Marfan events, and representation on their social media pages. I began dedicating time to post my story on social media in 2023, and I have grown a community on TikTok and Instagram to raise awareness for Marfan Syndrome. I feel very lucky to have a whole community near and far that understands my rare disease and loves me as who I am.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
Living with Marfan Syndrome is difficult. The daily symptoms, risks, and comorbidities are hard to deal with physically and mentally. Everyone is affected differently, but my journey has been full of ups and downs. I have had multiple surgeries, procedures, testing, pokes, and traumatic experiences while trying to get through the physical symptoms of Marfan Syndrome. Additionally, all of the pain and worry has carried into my mental health. While mental illness is not a comorbidity to Marfan Syndrome, the mental toll many experience can lead to mental health diagnoses. Dealing with pain, hospitals, and tying to take care of a broken body is a lot. On the positive side, I have found some of my closest friends through living and sharing my experiences. I am learning how to deal with all that I have endured through Marfan Syndrome, and I try to turn it into positive energy for others to learn.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
I am currently a student at Eastern Michigan University. I will be graduating in December of 2025 with a Bachelors of Arts and Sciences in Sociology. I have been a nanny for 8 years and I love it. My goal is to become a Child Life Specialist because of the positive impact they had on me during my time in the hospital.
How do you define success?
I believe that success is whatever makes you feel good and purposeful. If you are happy, content, and living life, or even just accomplishing things to survive, that is success. You can learn to know what is good for you and will make you a better person to yourself and others.
Contact Info:
- Website: https://lnk.bio/graceelizabeth.03
- Instagram: https://www.instagram.com/graceelizabeth.03
- Other: https://www.tiktok.com/@graceelizabeth.03
Image Credits
Tim Joyce (first image)
