I was diagnosed with Marfan syndrome around the age of 12 years old, while growing up in Meridian, Mississippi. My diagnosis was brought about due to poor vision, which, it turns out was caused by dislocated lenses in both eyes. This led to my first surgery related to Marfan syndrome and was the beginning of my life with the condition.
When we found out that I had it, my family and I were shocked, scared, and a bit confused, being that we had never heard of Marfan syndrome or its features. conditions, symptoms, or any cures.
As a kid, a lot of things changed in my life after my diagnosis. I could no longer participate in sports involving physical contact such as football, baseball, basketball, or anything with high levels of exertion, which was very hard for me because I was an active kid.
One thing that my diagnosis didn’t change was my drive and ambition. I decided to put more focus on what I could do versus what I couldn’t do. I was determined not to let Marfan syndrome control my life entirely and I can honestly say it hasn’t. I’ve been through four eye surgeries, a lung surgery, and aortic dissection surgery, but I am as much of an advocate for Marfan syndrome as ever.
Now, as an adult, seeing kids get diagnosed makes me think about how I felt at the time of my diagnosis. I was confused and quite afraid, to be honest, because I didn’t know what to expect. As a young kid, you’re not sure what’s going to happen to you. What I want to tell all young kids who have been diagnosed with Marfan syndrome or a related condition is that you don’t have to be afraid because there are people out there with the knowledge, medical expertise, and love for you that will help you and your family through this. You are not alone and there are people who can be with you step-by-step.
Instead of being afraid, be knowledgeable. When you know your do’s and don’ts, life is so much easier. And remember, people without Marfan have do’s and don’ts in life as well.
Knowing my condition and myself saved my life. Four days before I was scheduled for surgery, I suffered an aortic dissection. Because I knew the signs and symptoms, I was able to tell the emergency responders to take me directly to the hospital that was going to do my aortic surgery instead of potentially being misdiagnosed elsewhere.
Because I lived through the power of education and awareness first-hand, I continue to educate myself about the syndrome and related conditions. I want to travel throughout my community and this country spreading awareness and knowledge for others. Without awareness and knowledge this can be a dangerous condition, but with awareness and knowledge, people with Marfan syndrome can live full and peaceful lives.
It has certainly not all been peaches and cream, but due to groups like The Marfan Foundation and my doctors at the Mayo Clinic in Jacksonville, FL, life has been a lot easier. The key to winning over Marfan syndrome and any other condition is knowledge. Having the knowledge and awareness of my condition makes life for me and my family so much easier. We know what things to look out for and what precautions to take. For me and for our community as a whole, the key to a healthy life is awareness.
Taborski McClellen of Jacksonville, FL, is a volunteer advocate for The Marfan Foundation and has participated in Hill Day with the Foundation. He is passionate about spreading awareness and education about Marfan syndrome.