I was 4 years old when I was diagnosed. My parents said I’d wake up in the middle of the night every night covered in blood due to a severe nosebleed. The doctors thought at first I had Leukemia but the results showed that it was actually Von Willebrand Disease type 1. My parents have never heard of it till then nor do they know which side of the family it came from.

Growing up I wanted to do gymnastics but I was such a liability, no gym would take me, my parents were even willing to sign legal paper work but still was denied.

In first grade I stayed the night in the hospital due to a nosebleed that wouldn’t stop – my DDAVP wouldn’t work, I went through 2 boxes of tissues in 30 minutes. It was a long a night.

In second grade I was finally able to do soccer for my school, just a little cub where you learned the basics and got to start competitive skating at the local rink which only brought on multiple bruises which a couple years later I stopped. It wasn’t until I was in 8th grade did my parents begin to “shorten the leash”. I was able to cheer with my friends and in HS started field hockey, tennis and track. My hematologist at the the time was EXTREMELY wary on this but she and my parents agreed I was old enough to know what to do Incase an episode happened and they weren’t around.

Since high school, my nose bleeds have subsided quite a bit, but I do still find random, unexplained bruises quite often. I’ve had doctors ask me what vWD is, even look it up with me in the room because they had never heard of it. Each time my response is “it’s like Hemophilia but it’s not Hemophilia”. Growing up I’ve had teachers and subs refuse to let me go to the nurse so I could get my medicine when I was bleeding, they’d call me a liar, say I was barely bleeding, etc. – you name it they said it. I’ve had classmates yell at them saying I need to go regardless how bad it is, I’ve walked out of the room multiple times when they wouldn’t let me because they doubted me.

I’m 26 years old now. There are still people that doubt me. When I’m in pain, my loved ones make crude remarks about it. They don’t realize that yes it does happen often, but it takes a toll more than they know. Ice and Tylenol doesn’t always help.

I’m 26 years old now. I let it stop me for so long. I let people’s words go in one ear and out the other. I didn’t ask for this life but I sure do embrace it. It’s apart of me. It’s who I am. It has its ups and downs but so does everything in life. I don’t let it stop me anymore!