MIRAMAR, Fla. – February is American Heart Month and is also designated to raise awareness about a rare connective tissue disorder called Marfan syndrome, which can have devastating effects on the cardiovascular system.
Joaquin Ramos Jr., 39, grew up participating in sports and never worried about his health.
“I just lived my life normally and everything until July 31st, 2020, that’s when everything kind of came to an abrupt halt,” he said.
That’s when his left arm suddenly went numb.
“I went to the ER just to make sure and that’s when they said you only have about a few hours to live right now we need to take you for emergency heart surgery,” Ramos said.
He had suffered an aortic dissection which is a tear in the inner layer of the large vessel branching off from the heart and was ultimately diagnosed with Marfan Syndrome, which affects, the heart, eyes and musculoskeletal system.
“Marfan syndrome can begin in childhood with mild manifestations, for example, a chest deformity, scoliosis, a heart murmur but as the patient gets older, he or she may develop worsening symptoms,” said Dr. Roma Yusupov, a geneticist with Joe DiMaggio Children’s Hospital.
Yusupov said patients can ultimately need surgery for vision and orthopedic problems but the most severe complication is an expansion of the aortic valve.
“Unfortunately it is relatively common because you don’t feel your aorta is expanding and you don’t have any pain the only pain you may have is when the aorta is ready to rupture and you may need emergency surgery in order to save your life,” he said.
Since his diagnosis, Ramos has become actively involved with the Marfan Foundation, which has provided him with much-needed support.
“I think the greatest lesson I’ve learned from that is gratitude just being grateful for things around, the people around you,” he said.
Over its 10-year history, the Marfan Clinic at Joe DiMaggio Children’s Hospital has treated an estimated 500 pediatric and adult patients with Marfan Syndrome.
On Sunday, the annual “Walk For Victory” to benefit the Marfan Foundation will be held at TY Park in Hollywood, and Local 10 is participating in the event, which begins at 11 a.m.
For more information on how you can support the effort go to: www.Marfan.org
Local 10 Walk Team: https://give.marfan.org/team/399224