ROW-B17: She's a Bleeder!

As a baby, I was diagnosed with type 3 von Willebrands Disorder (vWD) which is a disorder that affects the proteins in the blood that help it clot and stop bleeding. From that day onward, my (and my parents) lives revolved around this. While vWD is a rare genetic disorder, it is actually the most common bleeding disorder known – even more so than haemophilia, which is usually the one everyone knows about! (Me: I have a bleeding disorder, my blood doesn’t clot. Person: Oh yeah, haemophilia, right?) No, not right. Interestingly, most people who have vWD have the mild form, and could go through their whole life without knowing. Type 3 vWD is a rare and more severe form of the disorder – and one of the common symptoms are spontaneous nosebleeds.

So why am I interested in writing about this?

Advocacy!

As with any rare illness or disability, it is so important to raise awareness. This is especially so when the illness is not visibly affecting the person. When people around you understand what you might be going through each day, there is a huge impact on your mental health, self-worth, and overall wellbeing. Treatment options and the potential for a cure for vWD are improving every day, and it is through awareness that this type of research continues.

‘Cause Science

Even though vWD is a genetic disorder, neither of my parents actually have it! Even more interestingly, to obtain the wonderful type 3, usually you need to obtain the genes from both parents. Unknowingly, both of my parents were carriers for the vWD gene and both of them passed it on to me, and later my younger sister. The odds were ever in our favour! You can read more about the genetic makeup here, and I will also delve into it a little more later. Science is such a weird and wonderful thing and the makeup of every cell in our body through genetics is fascinating.

Write about what you know…

I have lived with this disorder my entire life, so it’s safe to say that I am quite qualified to write about what life is like with vWD! I feel comfortable expressing the hardships, or the small wins. As always, I am not a medical professional and I will always link to information unless it is a personal opinion.