Hemophilia Is A Part Of My Life
As soon as Daniel B. starts talking about his disorder hemophilia, he finds himself answering the same questions over and over again. Read about how he regularly responds to these questions here in his blog post.
It is amazing to hear people’s thoughts on hemophilia. When I tell a new person I meet that I have hemophilia, they say something along the lines of “oh, so if you get a cut you’ll die?” It doesn’t surprise me; after all, there are only about 20,000 people living with hemophilia in the United States. It can be a little annoying, but I am usually just amused to hear what idea of hemophilia they’ve conjured in their head. The fact is hemophilia is a blood disorder that causes my blood to have trouble forming clots. If I take my medicine that has the missing factor VIII protein in it, I am just like a normal person, at least temporarily. I guess this debunks the “cut and die” idea!
In my daily life, hemophilia affects me in a variety of ways, the most prominent of those being the infusions I must take, which can be annoying and tough to maintain. The other big thing is the limitation on some activities, specifically sports. Luckily, my favorite sports are swimming and crew, and these are relatively safe sports for a person with hemophilia. The other annoying thing is the additional precautions I must take in order to participate in some activities.
Last year, my mom spoke to me about an international STEM camp for children of Bayer employees. At first, I didn’t think much of it, but eventually, I decided to apply. I was nervous as I had never been so far away from my family and fully responsible of taking care of my disorder on my own.
The months leading up to departure were spent preparing for the big trip. My parents had to coordinate with the STEM camp directors and with my doctors. My mom also called the Hemophilia Treatment Center in Colorado to make them aware I would be in the area in case of an emergency. The extra work was annoying, but understandable. All the adults at camp and at Bayer were a little freaked out to have a teen with hemophilia climbing the tallest mountain in Colorado. My hematologist wrote letters reassuring everyone that I was perfectly capable of caring for my hemophilia independently, and that I should be otherwise in good shape to do the climb like everyone else.
Skipping the flights and the goodbyes, the trip itself was amazing! The kids I met there are ones I still talk to today. At the campsite, we bonded together so easily and soon enough we were like a family together. The time in Boulder and Leadville went by way too quickly, with educational and activity-packed days producing extremely tired kids by the end of each day.
Our ultimate challenge soon arrived: the hike up Mt. Elbert. We all arose at 3 am, and began our hike before the sun came up. It was a long and grueling experience, but with my favorite new friends by my side, I got through it and made it to my personal summit. I’m not afraid to admit tears were shed at the top. It was an amazing moment for all of us. Going home was tough, but the realization that I would have these people in my heart caused no tears to be shed during the goodbye.
