I am at peace with my von Willebrand Disease
I am at peace with my von Willebrand Disease
Maddie, 16, Oklahoma
Perhaps dance is the medium through which we show the world who we truly are and who we can be. My name is Maddie and I am a 16-year-old dancer from Oklahoma. I have type 1 von Willebrand Disease, but I work to not to let it define who I am. I dance, I enjoy the fine arts and I like to play a little tennis in my free time. I'm also an active leader in my school, church, and just about anything else I'm involved in! I tell everyone I meet and grow a trusting, healthy relationship with about my disorder. It is important they know about vWD in case anything happens while I'm with them. I live my life just as I did before I was diagnosed. Nothing has changed really; I only know more about myself and who I am. This is a picture I took at my dance recital last year. But my journey only started a short while ago. So, I am new to the rare disease community.
It's a little strange how it starts, but here it is: ever since I got my menstrual cycle it had always been heavy and irregular. We thought it would fix itself after a few years, but it didn't. So, my mom took me to my doctor about a year ago and they took so many blood tests that I got sick and dizzy. I did other types of tests, but they came out fine. Finally, my blood tests came back and said that I have type 1 von Willebrand Disease. This was a whole new adventure for my family and me. I was put on birth control to regulate my cycle and prenatal pills to keep my iron and vitamins under control. We researched everything that was happening and educated ourselves on the certain precautions that need to be taken. Once everything had settled down my parents and I just looked back on things that had happened to me before and thought "Yeah, it all makes sense now!"
I've grown at peace about this and I know that whatever happens in the future God has got it in His control!