From L to R: Guillermo De Angulo, MD; Sofia Miranda, APRN; Kevin; Ziad Khatib, MD.
Kevin was only two years old when he was diagnosed with hemophilia, a rare bleeding disorder that prevents the blood from clotting properly.
Kevin and his family were referred to the Cancer and Blood Disorders Center at Nicklaus Children’s whose hemophilia program provides multidisciplinary care for blood disorders. The team consists of hematologists, advanced nurse practitioners, infusion nurses and specialists in orthopedics, psychology, dental, physical therapy, and radiology.
Although there is no cure for hemophilia, thanks to advancements in medicine, treatment options are available. They often include medications and infusions to prevent serious bleeding and complications.
At a very young age, Kevin learned to give himself his medication, which he had to inject every other day. Kevin says his parents were instrumental in providing support and instilling in him the importance of being an advocate for himself.
“Although it was difficult to have to learn to poke yourself as a child, it taught me at a very young age to listen to my body and take care of myself properly. Because of this, I was able to lead an active lifestyle and even play soccer all throughout my childhood with no issues,” he says.
All children with hemophilia can lead active lifestyles with proper care and management, says Sofia Miranda, Advanced Practice Nurse Practitioner with the Hemophilia Treatment Center at Nicklaus Children’s Hospital.
“It is important for children and families to have constant, open communication with their care team. In Kevin’s case, he called anytime he had a question; he came in for all his appointments and followed through with his medications. Kevin is true testament to the fact that with good communication and following instructions, patients can lead an active, healthy life with hemophilia,” she said.
Kevin, who is now 28, says he owes his success to his family, his care team and of course, himself, for being his own advocate.
“I had such an active childhood growing up and still do. I have never needed a knee or joint surgery, something that is very common with hemophilia,” he says.
Kevin was just recently married and works in investment management. He continues to share his story with all those affected by hemophilia, especially children, in order to provide hope and inspire others that it is possible to live a regular, healthy life.