There are more causes then there are months in a year and that means that all 12 of them have multiple designations. March is Endometriosis Awareness Month, National Kidney Month, National Nutrition Month, National Reading Awareness Month, Social Work Month, Music in Our Schools Month, Colon Cancer Awareness Month, National Athletic Training Month and of course, Women’s History Month.
And I don’t mean to take away from the kidneys or the important impact of women throughout history and in the modern day but to me March has always been National Hemophilia Month. In 1986, President Ronald Reagan issued Proclamation 5442 in 1986 which designated March as National Hemophilia Month. But these days we usually call it Bleeding Disorder Awareness Month, so as to not exclude our brothers and sisters dealing with Von Willebrand Disease, Bernard–Soulier Syndrome and other similar disorders.
Loyal readers already know that I was diagnosed with severe hemophilia A after excessive bleeding during a procedure when I was very young. But it doesn’t matter when it was diagnosed – it’s been there the whole time. I’ve met people who suffer from a low severity version of the disorder and weren’t properly diagnosed until their late teens.
It can’t be spread from person to person – it’s genetic. The hemophilia gene travels on the X chromosome and mostly affects men. Hemophilia skips a generation: my potential sons won’t have it, but my daughters will be carriers. The male offspring of a carrier has a 50 percent chance of being a hemophiliac, and the female offspring have a 50 percent chance of being a carrier themselves.
But sometimes hemophilia pops up in a newborn who has no family history of the disorder. The blood clotting gene can deteriorate over the course of a few generations and eventually result in a child with full blown hemophilia. That’s one of the reasons it’s important to be aware of these sort of blood disorders – sometimes there is no warning when there’s a new mutation. Sometimes a genetic mutation allows you to shoot lasers out of your eyes, or control the weather – but sometimes it just gives you faulty blood.
Taylor Swift has nothing on us, our blood is so bad that it doesn’t even function right. The genetic blueprints for blood production in the body of a hemophiliac produce blood that doesn’t clot properly, which can cause more serious problems than wounds bleeding out longer than they should. Sometimes muscles, joints and even organs fill with blood and become painful and eventually unable to move or function properly. The technical term for these events is “bleeding episodes” but we usually just call them “bleeds.” Like, I woke up with a bleed in my elbow, it’s time to infuse.
But these bleeds can be mostly prevented with a prophylactic regiment of replacement factor. Sometimes it’s taken out of the blood of well-screened and well compensated donors, sometimes it’s brewed up in a lab. There are a wide variety of brands of what we call factor, and most sufficiently severe hemophiliacs have to take it intravenously multiple times a week just to prevent excessive bleeding, both external and internal.
I self-infuse my factor twice a week – as a community we encourage young hemophiliacs to learn how to stick themselves, to take some of the burden off of their families and so that they don’t have to depend on a nurse or anyone else to do it for them. This is one of the initiatives that we focus on each year at the two hemophilia-centered Missouri summer camps that I volunteer at each year. Year after year they make progress: first they mix their own factor; that used to be quite a process, but the reconstitution technology is getting better. Then they try to stick someone else, they then try to stick themselves and soon they’re self-infusing with the best of them.
Happy Bleeding Disorders Awareness Month, everyone!
Travis McMullen is a longtime Sedalia resident who shares his views on the city through his weekly Democrat column.