Connective Issues Winter 2024

OVERCOMING CHALLENGES AND FINDING COMMUNITY: Jerome’s Journey

Living with a genetic aortic and vascular condition can lead to feelings of isolation and take a toll on mental health. However, with a strong support network and a positive outlook, people like 33-year-old Jerome from North Carolina can navigate challenges and find a renewed perspective. Diagnosed with Marfan syndrome at the age of five, Jerome faced numerous medical procedures throughout his life, a ff ecting both his physical and mental well-being. Jerome and his two brothers were diagnosed with Marfan syndrome at early ages due to distinctive physical features such as thin, long fingers and limbs. Their mother had the condition from a spontaneous mutation. Growing up, Jerome regularly saw cardiologists, orthopedists, ophthalmologists, and retina specialists. At 15, he underwent corrective spinal fusion surgery for scoliosis and later lost vision in his right eye due to a retinal detachment. Two years later, he learned that his ascending aorta had enlarged, requiring surgery. Overwhelmed by the physical and emotional toll, he made a risky decision to avoid the surgery. “As a teenager going through all of these drastic changes back-to-back, procedure after procedure - I was terrified,” said Jerome. “I chose not to have the heart surgery strictly out of fear. I had already been through so much, and I’d had enough.” Mental Health Struggles Jerome’s high school years were marked by academic struggles fueled by insecurities about his appearance. Standing at 6’4”, he tried to hide in the background and not let friends get too close, fearing exposure of his family’s health challenges and his own condition. He worried about being viewed as inferior and weak. “My brothers and mom also had similar experiences with being picked on because you look di ff erent - you have longer fingers and you’re super tall compared to the rest of your peers,” he said. “That did play on us mentally but what helped us was always having family and faith.” Focus on Education Jerome pursued higher education at Morgan State University. During his senior year, he felt a tightness in his chest and experienced labored breathing, leading

 Jerome with his wife and children.

to emergency surgery and the implantation of a mechanical valve. After his surgery, Jerome gained a new perspective on life. “My life definitely changed after that,” he said. “I was determined that I wasn’t going to allow my condition to stop me from being the first in my family to go to college and set a new standard for my family. I was able to use Marfan syndrome and all my experiences as motivation to push forward.” Determined not to let his condition hinder his goal, Jerome shifted his focus to academics, eventually graduating with a degree in finance in 2013. However, throughout these years, Jerome continued to keep his struggle with Marfan syndrome hidden from friends. Joy and Loss Jerome’s post-college life brought simultaneous joy and loss. In 2017, Jerome married and later became a father to two children, Alani and Josiah, neither of whom

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Marfan.org