HOLLYWOOD, Fla. — Being a kid can be tough enough. Growing up with a serious health condition can make it even harder.
Haley Langford, a 12-year-old South Florida seventh grader, is facing that challenge head-on while advocating for others living with Marfan syndrome, a genetic connective tissue disorder that can be life-threatening if left untreated.
Local 10 first met Haley in 2020, when she was 6 years old and learning to live with the condition. Today, she is an avid reader, enjoys spending time with friends and family, and dreams of becoming an astrophysicist.
“I feel like a normal kid,” Haley said. “I am able to live like a normal kid.”
Marfan syndrome affects connective tissue and can impact multiple parts of the body, including the heart, eyes and skeletal system. Patients are often tall and thin with loose joints and must be closely monitored due to the risk of aortic aneurysms.
“Marfan syndrome is a connective tissue disorder that can affect your heart, your eyes, and your muscular skeletal system,” said Dr. Roman Yusupov, who runs the Marfan Clinic at Joe DiMaggio Children’s Hospital.
Education and early diagnosis are critical, doctors say, not only for medical outcomes but also for helping young patients cope with the condition.
“It just helped a lot having everyone tell me about it. It helped me understand that I was not alone. and that it’s not necessarily a normal thing, but I’m really not that different,” Haley said.
With proper care, patients can expect to live full lives.
“That is very important to understand that with appropriate treatment, a lifespam for a person with Marfan is normal,” Yusupov said.
Haley takes daily medication to help protect her heart.
Because Marfan syndrome can affect patients in different ways, Yusupov said a multidisciplinary approach is key. The Marfan clinic at Joe DiMaggio Children’s Hospital, now in its 15th year, brings specialists together to treat patients comprehensively.
“It’s very important to have a multi-disciplinary clinic like we have at Joe DiMaggio Children’s Hospital, where doctors understand exactly what Marfan is and treat these patients holistically,” Yusupov said.
The Walk for Victory to benefit the Marfan Foundation will be held Sunday from noon to 3 p.m. at T.Y. Park in Hollywood.
Local 10 has a team walking at the event. If you’d like to get involved or donate to the cause, visit our Team Top Ten page by clicking here.
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