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Juan M Redefining a Life with Hemophilia

“In a strange way, I am grateful to have Hemophilia A as it has made me more aware of my body, my diet, my exercise and has helped me to push to the next level,” said Juan.

Hemophilia does not slow down Juan Moreno’s active lifestyle.

Juan Moreno never wanted to be defined by his hemophilia, a disease he has had since birth. Instead, Juan has used his diagnosis as his motivating factor to live an active and healthy lifestyle.

An inherited genetic disorder given to Juan via his mother who was a carrier, hemophilia impairs one’s blood from clotting normally because it lacks sufficient blood-clotting proteins. People with hemophilia may bleed for a longer time after an injury than if their blood clotted normally. While small cuts usually aren’t much of a problem, internal bleeding, especially in knees, ankles and elbows can cause organ and tissue damage, and may be life-threatening.

Juan’s earliest memories of having the disorder were as a young child playing outdoors where his elbows, knees or ankles would swell or bruise easily after contact.

“In a strange way, I am grateful to have Hemophilia A as it has made me more aware of my body, my diet, my exercise and has helped me to push to the next level,” said Juan.

As a young adult, Juan was referred to Newark Beth Israel Medical Center, one of only four state-designated hemophilia centers in New Jersey that treat both pediatric and adult patients with inherited bleeding and clotting disorders. Annually, Juan is evaluated by the hospital’s team of experts including hematologists, psychosocial professionals and physical therapists and he receives regular intravenous replacement of the specific clotting factor that prevents or stops bleeds. He also does replacement therapy at home, through Newark Beth Israel’s self-infusion homecare training program.

In addition to his family, Juan credits the staff at Newark Beth Israel for his ability to maintain a normal lifestyle. The nursing staff has been a constant for Juan providing comfort, care and even accommodating last-minute requests for documentation to carry medicine on flights and letters of support for employment.

Juan concluded, “Despite having hemophilia, I lead a very active lifestyle, including playing competitive soccer in a men’s league. I decided long ago not to live my life in fear, not to use hemophilia as an excuse and live my life to its fullest.”