Hurdling Over Hemophilia
Like most 15-year-old girls, Hannah James enjoys going to the mall with friends, dancing at Friday night football games, and spending time with family and friends. Unlike most people, however, Hannah has to meticulously plan her days to prevent her from experiencing symptoms of hemophilia.
Hemophilia is a blood disorder in which a person is missing one, or part of one, of the 13 clotting factors necessary to help the blood clot and heal minor bumps and bruises. It can range from mild to severe, and the most common symptom is internal bleeding into muscles and joints, causing joint deterioration. Hannah, her sister, and her father all have hemophilia.
Hannah was diagnosed two years ago, and she has had to learn how to manage her days. She says, “What makes my days different is that I have to plan ahead for anything physical I might be doing. At our house, we call it ‘saving our steps.’ There are only so many steps in a day my dad, my sister, and I can take before bleeding into joints and pain ensues.”
Hannah must decide where she wants to spend her steps and then plan rest for before and after an activity. She must also ice her joints and muscles, if she has bled.
Carla James, Hannah’s mother, says Hannah’s diagnosis explained a lot. She could finally understand some of the pain Hannah had experienced, and she no longer felt helpless. She’s proud of her daughter for becoming a positive role model for those with hemophilia. Instead of letting the disease bring her down, Hannah faces it head on. She explains, “Hannah has faced this with greater confidence than most adults would have. I have seen her get knocked down a few times this year only to rise stronger and more determined to live life.”
Hannah was recently chosen to participate in a Broadway-style production, Hemophilia: The Musical, in New York. Children from across the country who have bleeding disorders were selected as the cast. The audition process was intense, but Hannah knew this was something she had to do. She says, “There are different ways to do normal things. Most kids feel like they can’t do anything active at all, but singing and the arts are things you can do in the community without straining your joints and muscles.”
Hannah’s thrilled to give back to the hemophilia community through the musical, but her giving back doesn’t stop there. Hannah and her family run a national charity called Hope for Hemophilia, which provides resources for those living with hemophilia.
“If you are a kid, have a child with a disorder, or have family or friends with any kind of disorder, I hope you look to the future even though it may hold pain,” Hannah encourages. “I hope you can find solace or help in the good things in life. Stay positive and stay in touch with your community.”
Carla beams with pride as she shares how brilliantly Hannah has handled everything. She says, “I really can’t explain the emotions when your child is dealt a hard hand, and rather than give up, she chooses to ‘ride the bull.’ Hannah takes what is given to her and quite literally makes the absolute most of it.” ■