Connective Issues Spring 2024

Community Member Takes the Stage to EDUCATE OTHERS ABOUT MARFAN SYNDROME

Community member Buddy Benge was invited to tell more than 10,000 associates at Edward Jones about his journey with Marfan syndrome as part of Heart Awareness Month in February. Buddy, who is head of Human Capital Insights for the company, kicked o ff the educational event and was able to speak openly about his condition including his family history, his stroke and open-heart surgery, and provide vital information about Marfan syndrome to the audience. “I received such an outpouring of support and love from my coworkers afterwards,” said Buddy. “So many of us struggle with the hidden part of Marfan syndrome that often we don’t open up to let people in and know that we’re fighting this fight. It’s so important for us to share and let others to know the symptoms.” Family History Leads to Diagnosis “My journey with Marfan starts with my family, and some tragedy,” said Buddy. “We had always suspected my father of having the condition, but it wasn’t until January 2007 that we learned for sure.” New Year’s Day 2007, Buddy’s father passed away due to an abdominal aortic aneurysm dissection at the age of 55. There was a family history of retinal detachments, greater than average height, and the common musculoskeletal issues associated with Marfan syndrome, but Buddy wasn’t diagnosed until five years later. “I had developed a lazy eye that worsened, so I visited an ophthalmologist who suggested I see a retina specialist and an expert in Marfan syndrome, Dr. Alan Braverman,” said Buddy. “I remember when I visited Dr.

 Above: Buddy, center, with colleagues from Edward Jones Left: “Hurting but feeling grateful” after surgery in 2022

Braverman, he instantly knew I had the condition. He was so comforting and really helped me understand so many things about my own personal history that I had never pieced together.” Getting Connected with Community After being diagnosed in 2013, Buddy joined a Facebook group for Marfan syndrome to learn more about his condition and connect with others like him. “It was so eye opening,” said Buddy. “First, so many people looked just like me. Secondly, it gave me comfort to know that there was such a large support group. Buddy and his wife became more involved with the Foundation and, in 2018, they attended the St. Louis Heartworks Gala which is hosted annually by Dr. Braverman and his wife, Rebecca. Buddy and his family have supported the event ever since. “I had open heart surgery in 2022, and without the work of The Marfan Foundation, I really don’t know if I’d be alive today,” said Buddy. “I may not have started getting regular check-ups. I may not have been getting the echos and the CT scans that alerted Dr. Braverman to my aneurysm. Please, if you have Marfan syndrome, make sure you’re getting checked regularly.”

Marfan.org “

“As we take our medicine, and talk with doctors, our average life expectancy gets closer to normal, and that means we can accomplish our dreams and aspirations like others. Many of us bring so much to the world because of the struggles we overcome and the personal journeys of pain and sacrifice.”

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