My Von Willebrand Journey
Let’s be brave together and spread awareness.
I love sports, all aspects of sports, and on the first day I played sports, I felt a rush that never left. Like many boys my age, I played baseball and got hit in the face a few times; a small but necessary part of the experience.
With the love of sports came the realization that I would get hit, hurt and of course bleed from some injuries — like a nosebleed after a baseball hit my face. I’ve seen others get hit and bleed from balls, tackles, falls, you name it.
I thought to bleed was part of life and there was nothing really special about it.
Throughout the early years of my life, I would bleed unexpectedly and routinely. I didn’t think much of it, but I began to worry about nosebleeds that would wake me up in the middle of the night, last ten to fifteen minutes, and form extremely long clots, or as I call them, “strings of blood.”
In elementary school, I participated in tae kwon do at my local dojo. My parents were very cautious and always reminded me to be safe. Usually we weren’t fighting each other at Tae Kwon Do, but there were occasions in which we had to spar. A hit to the head was illegal, and we wore lots of protective gear, so rarely did I get hurt during this activity. Sometimes my nose would bleed due to the intensity of the workout, and other kids freaked out when they saw it, but I just calmly went to the bathroom and cleaned myself up before returning. This took place from 3rd to 7th grade, when I began playing soccer.
One night, in third grade, I woke up at 2 am with a nosebleed and went right into my routine as an experienced bleeder: I pinched my nose and calmly woke one of my parents to help me. This bleeding routine was part of life for me so I wasn’t panicked or scared.
I pinched my nose and joined my dad on the couch, watching television and waiting for the bleeding to stop. My eyesight suddenly blurred and as I tried to “blink it out,” the blurring only increased to the point where I couldn’t see at all out of my right eye.
I looked up at my dad, about to tell him I couldn’t see. He took one look at me, grabbed me and walked me to his bathroom while also waking up my mom. Next thing I knew, they were swabbing my eye with cotton pads which were soaked with blood. I had no idea what was going on, I didn’t panic and slowly I was able to see clearly. The bloody nose stopped soon after that, and my parents and I went back to bed.
The next morning I went in to see my doctor, and he told me that the blood had pooled up inside my nose to the point where it could only exit my body out of my eye sockets. Bleeding to this extent had never occurred before, and while my parents were worried about it, I was 8 years old and it was more of a nuisance than anything else. The doctor told me to have my blood tested, because my excessive bleeding had given him reason to believe that there was some abnormality in my blood.
As the doctor requested, my mom, brother, and sister went to the City MD for a blood test, a process which I had never experienced. I expected to get a finger prick for my blood test — I was sadly mistaken. The nurse sat me down in a chair, while my siblings were watching from the door, and asked which arm I wanted to use. Admittedly, while the thought of a needle inserted into my arm made me panic, with my brother peeking into the room I had no choice but to prove to him that I was tougher, so with a shaky voice I replied, “Left.” The nurse filled three tubes and I was glad that it was over.
The middle-of-the-night nosebleeds continued. On one particularly bad occasion, I was with my parents in the dining room. It was common practice to tilt your head back while pinching your nose so that the blood wouldn’t drip out. After sitting and pinching for over 10 minutes, my stomach began to hurt; I was swallowing the blood that wasn’t coming out of my nose as it had nowhere to go. At some point my stomach couldn’t hold it anymore, and I threw up all over the dining room table. It was ugly but I was glad that my nosebleed had finally stopped.
My mom and I took a day off school to go to the hemophilia center in midtown Manhattan where I found out that I had Type 2 Von Willebrand Disease (VWD). They explained it to me in a way that I still explain it to those unfamiliar with the disease: it is a mild blood disorder that slows the speed at which I clot, resulting in longer and heavier bleeds. I was also told that day to avoid certain contact sports, especially hockey, football, lacrosse, and rugby. Soccer is also a contact sport but I was already hooked by then and wasn’t going to give it up. You might say that it is a bit more gentle than the others, but as I experienced as a player, it is a contact sport.
I was 8 and following my visit to the hemophilia center, I would have to get my blood tested (yes, a needle in my left arm) at least once a year. The needle experience was scarier than the symptoms of the disease which by now I was accustomed to. Thinking about my blood being drawn, I decided that if I had done it once, I could do it again. It was my new reality and I would just handle it.
I started wearing a medical bracelet in 5th grade. My doctor recommended Medic Alert to my mom, who then went online and bought me both a bracelet and a necklace. I though the necklace was cooler, but my mom insisted that I wear the bracelet at all times — I never took it off until it fell off. It didn’t feel weird to wear it, and when people asked what it was for, I would be honest yet keep it simple: I have a blood disorder and it has my doctor’s number in case something happens. Usually they wouldn’t ask any further questions.
Like many kids of my age, I went to summer camp each year. It was an exciting part of my life but also scary at times. I had a blood disorder and a real risk that — if gone unnoticed or treated improperly — I could bleed to death. At camp, I was 200 miles away from home and the comfort of my parents springing into action if something were to happen to me. It didn’t bother me though; I could deal with my own bleeds at that point.
At camp, there were several instances in which my disorder affected my day-to-day life. While swimming in the lake, my Medic Alert bracelet fell off. I was supposed to wear it at all times, it sunk and was gone forever. I sent a letter home to my mom, and by the time she received it there were only a few days left in camp. When I got home, she made me pick out three new bracelets in case I lost it again.
I was 12 years’ old when I got the soccer bug. I loved playing, especially being part of a team and how all of us worked together in order to win. I was also very conscious that I couldn’t just play like everyone else — as a matter of fact, my doctor wasn’t thrilled about me playing, she sort of relented but banned me from ever heading the ball.
As you can imagine, I was willing to take a risk and ignore her instruction. Sometimes heading the ball makes a big difference in the game — when ten other players (not to mention everyone else in attendance) is watching, you want to do well. But, there were times where I was hit in the face by either the opponent’s elbow, head, or even the ball itself. As soon as I started to bleed, I was immediately pulled off the field by my coach who was aware of my condition. I was in 8th grade playing in the Manhattan Uptown final against Hunter when I was pulled off the field for that reason. We lost the game 1-0.
Overall, these past years have been difficult. I’ve had to deal with the stress of keeping my body safe while playing sports and the frequent trips to the doctor for blood tests, on top of continuing bleeding episodes. However, I have learned to live with my disease and I treated each incident as a way for me to learn how to handle it. If I were to meet someone who had recently been diagnosed, I would tell them to keep living life to the fullest. You shouldn’t have to give anything up which would mean that the disorder had won.
I feel that you can and should be the best version of yourself; do the things you want to do, never look back or doubt yourself. Today, as a sixteen-year-old, I look back to the day I was officially diagnosed. I did not allow VWD to change my life in a significant way. Instead, I choose to follow my motto: Live Smart Play Smart.
I recognize, as I am getting older that everyone has limitations; some that were not created by choice; those you were born with and others that are self-created by you or life. Playing sports, especially soccer which I love, was and continues to be the way I choose to confront my disorder; it has made me more resilient in not only dealing with hemophilia but honestly anything else I might face in the future.
I know that every kid who has a medical disorder or disease worries about his or her social life; the ability to lead a normal life and yes, develop friendships and even go out with the opposite sex. Like everything else in my life, I insist and plan on living my life to the fullest — I am open about my disorder, and while I am cautious about things that can expose me to danger (“Live Smart”), I do not allow them to control my future; I am aware of them and move on.
It’s way too early for me to think about marriage and children (wow, I can’t believe I even said that) but I know that there is a chance my children will have the disorder. I’ll cross that bridge when I get to it but I also believe that my life experience, education, and the incredible support I have from my family and friends, will have prepared me to not let anything stop me from having that experience as well.
The many years I’m spending in school provide me more than just education; they build resilience and my ability to deal with, “kids’ stuff.” I don’t feel the need to hide that I have a disorder and I know that revealing it can become a joking matter for others. For example, there’s a joke going around in school that “Brian can’t clot, and if he gets a paper cut, he will bleed to death.” I know that kids make fun of everything that can be made fun of and they don’t really mean any harm; I see this as part of life, as being a kid and that it’s all in good fun. As the saying goes, “don’t let them see you sweat.” Jokes or even my limitations truly don’t bother me but I also know that if my friends sensed that I was uncomfortable, they would stop the banter immediately.
I am not yet at the next big crossroad in my life; preparing to go to college and being away from the comfort of my home and the support of my parents. But again, I’ve been preparing for this all of my life; my parents have played a huge role in educating me about the disorder and I am confident that I will be able to handle anything that happens when I am miles away from home.
Going to college is also a test of independence and when you have a medical condition, it takes on a special meaning. I am ready, I’m not looking back and I know I’ll be fine.