As the second installment in this series, I wanted this poem to continue the theme of basic hemophilia education. Tuesday’s poem introduced a basic understanding of how hemophilia works, and today’s poem tackles the topic of inhibitors. According to the Hemophilia Federation of America’s website, 30% of severe Hemophilia A patients and 2-3% of Hemophilia B patients have inhibitors. As a severe Hemophilia B patient with an inhibitor, I know how important this topic is, and it’s very close to my heart. I also know how complicated inhibitors can be to explain to a young patient. With this poem, I’m hoping to make the concept a little easier to understand. I kept the theme of puzzle pieces because I thought this poem could work in conjunction with the first, to hopefully give young patients the ability to visualize how hemophilia works, both with and without inhibitors. When I was a kid, this is how I saw my inhibitor, and that visualization gave me a lot of comfort.
Hemophiliacs are already going to feel different from most of the kids around them, and having an inhibitor can make them feel even more isolated. I hope that by structuring the first and second poems similarly, it will show inhibitor patients that, while they’re a little different than hemophiliacs without an inhibitor, they’re not all that different. All they need to do is make sure they use their factor. Having an inhibitor has given me a unique position in the hemophilia community, and it’s one for which I am grateful. I hope this poem can help a young patient understand and embrace their inhibitor as something special, but not polarizing.
We all have hemophilia, no matter what we use to treat!
