By Daniel J. Vance
About 18,000 Americans have hemophilia. According to a National Institutes of Health website, the inherited bleeding disorder is caused when a person isn't born with enough of a certain protein necessary for clotting blood.
Two of those 18,000 are the 6- and 7-year-old children of Melissa Reddy of Middletown, New Jersey, who reads this column in the Atlantic Highlands Herald.
“My uncle also has hemophilia,” Reddy said in a telephone interview. “After learning my first son had it, I didn't know that much about it because we (as a family) had hardly discussed my uncle. So I had to do my own research.”
Given her family history, she learned that her odds of having another child with hemophilia were 50-50. Fifteen months later, her second child was born with it.
She said, “Now when they bleed, usually (internally) because of a bump, bruise or twisted ankle, I have to take them, their medication, and needles to the emergency room. I only have to do that once or twice a year now, but when they were falling a lot as toddlers, I was taking one or the other once a month.”
When planning family vacations, she first has to figure out if their destination has a nearby hospital equipped to treat her children. Fortunately, she said, her boys are only mild hemophiliacs, rather than moderate or severe. Even yet, when they arrive at an emergency room, doctors have to give them first priority. Her boys have to be treated even before any x-rays are taken.
Despite the potential for accidents and emergency room visits, for the most part the Reddy children play like most other boys. They enjoy baseball, soccer, basketball, biking, swimming and diving. But when injured, they have to tell their mother immediately.
“I haven't let it affect my life or theirs that much,” Reddy said. “I really don't have to stop them from doing anything; they just know the consequences. I remember stories about my uncle. He wasn't allowed to play football. So he played behind my grandmother's back, would get hurt and not tell. Then [his bleeding] would be so bad he'd have to be in the hospital a few weeks.”
She said much has changed since her uncle's day, including the availability now of man-made medication eliminating the possibility of hemophiliacs receiving HIV or hepatitis.
For more, see www.danieljvance.com or www.nhlbi.nih.gov