Connect Issues Spring 2021

"IT IS PART OF ME AND I HAVE ACCEPTED IT"

From the time I was five years old, my doctor closely examined my fingers and toes every year during my check-up. When I turned twelve, my doctor asked my parents, ‘Have you ever heard of Marfan Syndrome?’

By Solomon Welfare My parents had not and that began my journey into learning about this rare genetic condition that affects my body’s connective tissue. My doctor advised my parents to make an appointment with a Marfan specialist at the Sibley Heart Center as soon as possible, so I knew it was something serious. By the time I was diagnosed, it was pretty clear that my height would always be off the charts, so I got used to people making comments about how tall I was. As I got older, my pectus carinatum (pro- truding chest) became more pronounced. At first, I would always wear a swim shirt in the pool, but now I don’t care if people see it because it is a part of me and I have accepted it. With my Marfan diagnosis, I became more aware of my heart and the way it would sometimes beat really fast, but that just told me to slow down. Once I started high school and my doctor, Dr. Glen Iannucci, of Sibley Heart Center in Atlanta, gave the okay for me to be in marching band, I knew that I had found something that would not be impacted by Marfan and I had a blast doing it. My Mom is one of the many people with Marfan syndrome who did not know they have it. She was diagnosed after I was, but she said that it explained all her strange medical conditions. We both suffer from back spasms and leg pains, so it is great that she knows how to treat each ailment. Once, we

competed for the heating pad when both of us had back pain…I think she won that one, but we are in this together and it is nice to have someone who understands your medical issues. Last year I had an MRI and an MRA for the first time, to allow Dr. Iannucci to take a close look at my aorta. These images told my doctor, who then told my parents, that my aorta size had not grown and that was wonderful news to hear. I remember leaving that cold dim room, and thinking to myself, how many times had that machine taken an image of someone's body or someone's organ, and the news had not been good? After thanking the MRI technician, I walked out of that large room feeling happy and hopeful for my heart health. It may be scary when you are first diagnosed, but modern medicine has made so many advancements for us to live long and healthy lives. Not everyone will understand what you need to do for your health, but take the time to share knowledge with them. There may be a time that you need to communicate your physical limitations, whether you are at school or in other places, so be prepared to be your own advocate. Thankfully, my Mom and I have each other and we make a great team! Solomon Welfare, 18, was diagnosed with Marfan syndrome at age 12. Today he is a 2021 graduating senior at Wheeler High School in Marietta, Georgia.

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