My Story: Living With Von Willebrand Disease

Von Willebrand is an inheritable blood disorder. In layman’s terms, this disease is caused by either missing or low levels of a protein called the von Willebrand Factor, which is necessary to aid in blood clotting successfully. I was diagnosed at around 10 years old. After being diagnosed with Hashimotos Hypothyroidism at the age of eight, one would’ve thought I had enough going on for me medically — but I guess there was more in store for me. 

Flashback to when I was in the first grade — I fell on the playground during recess and cut both of my knees open. I bled so much that two of my friends practically carried me to the nurse’s office because I couldn’t stop the bleeding on my own. I didn’t think much of it at the time — I thought this was completely normal. Children typically get nosebleeds, and whenever I got one, it seemed to last forever. Of course, I figured that everyone my age experienced nosebleeds like this. I thought that everyone bruised super easily because for me, all it took was one tap against the corner of a table to give me a pretty decent bruise that would last for a couple of weeks. What started at seven years old with excessive nosebleeds turned into a lifelong battle with a blood clotting disorder. 

In middle school, I would miss school nearly every month on the first day of my period. Ever since high school, I’ve been taking monthly medications for my periods so that I don’t have to miss out on my education for something I cannot control. There was this one occurrence in my ninth grade biology class that is still burned in the back of my mind. I had gotten a paper cut on my thumb and of course I needed a Band-Aid and did not happen to have one on me. My teacher provided me with one, but after merely five minutes, I needed a second one. Halfway through the class, my tiny cut was still bleeding. I was so ashamed to have to ask for a third bandage from the teacher because I had already bled through the first two. She angrily gave me her last Band-Aid as I exclaimed that I have a blood disorder and I was sorry that I used all of them. Although I cannot recall her exact words, I will never forget how embarrassed and ashamed she made me feel in front of the entire class. 

When I was 12, I went through a series of testing to see if medication could help to raise my von Willebrand Factor. My experience with the Desmopressin (Ddavp) challenge test for von Willebrand involved having intravenous in both arms and bloodwork being taken every few hours as I spent my day in an infusion center. My pale face was suddenly a bright shade of crimson red and it felt as if my entire face was on fire — but at least the medicine made my blood clot faster. They had to take my blood every so often to see if the medication was helping. I can wholeheartedly say that was one of the longest days of my life. 

When I was 17, I needed my wisdom teeth removed. Most other teenagers dread such a procedure because they can’t eat the foods they love or because they’re forced to stay in bed for a few days. I was dreading the fact that this common procedure would be a whirlwind of events for me. On the day of my wisdom teeth removal, my mom and I drove about an hour away to get me the Ddavp infusion that I needed so I wouldn’t have excessive bleeding. We then drove an hour back home to actually get my teeth removed. Thankfully, I did not bleed more than the average person, but I knew that was due to the infusion. For the duration of my recovery, I had to take four pills every six hours, for a week, just so my blood would actually clot. 

As a person who already suffers from anxiety, this disease has only worsened it. I fear that I might get injured in some way and be knocked unconscious and sent to the hospital where they would have no way of knowing that I have a bleeding disorder and I need medication to make my blood clot. I am aware that it’s just my anxiety talking — but I have told every one of my friends and even acquaintances about my disease just in case.

Now that I am in college and I’m more independent than I once was, I have to take precautions, such as carrying Band-Aids with me and keeping my bleeding pills with me in my dorm room just in case. My parents aren’t physically here with me when I’m at school, so I have to remind myself when I need to take my pills. I have had to become so self-aware which benefits me, but I feel as though I’m paranoid. I feel as though I am always looking out for myself so that I don’t get a cut that doesn’t stop bleeding or a bruise that sticks to my body for two weeks straight. Explaining my disorder to people is probably the worst. Despite the fact that my disease is common and affects 3.2 million people in the United States alone, every time I mention von Willebrand to someone they seem to be so confused. Oftentimes, people will ask me if it’s hemophilia, which it is not even close to. 

 Although I have the mildest form of von Willebrand, it still impacts me day-to-day and will follow me for the rest of my life.