I was diagnosed with von Willebrand disease (VWD) three days after I was born, 25 years ago. A vitamin K injection caused massive bleeding, which eventually led my doctors to figure out I had VWD.
I have VWD type 3, which is the rarest and also the most severe kind. I have no von Willebrand clotting protein at all, so my blood cannot clot by itself. I experience spontaneous bleeding episodes, often into my muscles and joints, as well as other types of internal and external bleeding.
I won’t bleed to death from a paper cut, but an internal bleed could kill me. When I was little, for example, my stomach hurt. My mom told me to lie down and when she came to check on me I was pale as a ghost. It turned out I was having a GI bleed and my hemoglobin count was at a 2. A normal hemoglobin count should be at least a 12!
When I was 12, I started my period. The word “horrible” doesn’t even begin to describe it. I bled relentlessly for six years straight, despite every medication and procedure they could give me. I reached a crossroads when I turned 17. I could have a hysterectomy and go to college and become a nurse like I had dreamed, or I could continue to live my life in bed. I chose the former. Now that I’m grown I have to deal with the reality of that decision, but I wouldn’t change it.
Because I was in and out of hospitals so often, I had a lot of dealings with medical professionals. This inspired me to become a healthcare professional myself. I began as an ICU nurse, then transitioned to work as a hematology/oncology nurse at the Texas hospital where I’ve been a patient.
I’ve had some unspeakably bad nurses over the years but some remarkable ones as well. Both kinds of nurses played a role in who I am today. The remarkable ones motivated me to become like them, while the not-so-great ones inspired me to become one more good nurse in the world.
If I can say anything good about my disease, it would be that it created the passion I have for the medical field and I now have a tremendous amount of empathy for my patients. I have told several patients about my condition. I think it helps them to see that their nurse understands a little. And the kids think it’s cool when I show them I have a port-a-cath just like them.
My advice to people newly diagnosed is to know that you’re never alone. Sometimes it can seem like nobody understands, especially if your disease is rare. But I’ve learned that there’s a large community associated with bleeding disorders, and they welcome everyone with open arms.
I’m not going to lie: Having VWD type 3 sucks. Yet I’ve learned to play the cards that I was dealt as if it was the hand that I wanted. Something that seems like a weakness can sometimes be used as your strength. I would never have chosen this, but I have been able to use it to my advantage. I’ve used all the medical knowledge I’ve gathered through being a patient and now I’m an advocate for those around me as an empathetic, passionate and understanding nurse.