COMMUNITY

A New Pathway
by Brian Chapman

I remember many times growing up wondering why my nose bled so much or why when I’d crack my head everyone thought I was going to die. I remember walking down the street in Rome (where I served an LDS Mission) gushing blood from my nose and finally finding a kind tailor that offered to help by inviting me into his back room to sit down. I thought it was just natural for me; maybe I was just cursed to get hurt more often.

I was only diagnosed with von Willebrand disease in 2007 when a smart doctor finally decided to run blood tests to figure out why I almost bled to death after a throat surgery a couple years earlier. When the doctor told me I had a bleeding disorder I had never heard of, I thought this was just some excuse for the previous surgeon’s mistakes. Von Willebrand disease . . . is that some made up name that you tell patients when you don’t know what the real problem is? I’ve gotten a lot of that in my life. I knew what hemophilia was, or at least I had a small clue as to its impact. But this vWD thing was brand new to me.

I came to my first activity with the Utah Hemophilia Foundation only a couple weeks after that surgery where I was diagnosed with vWD, thanks to a hospital worker who was also trying to figure out what vWD was. That conference really changed my life—not the diagnosis, but the conference that explained to me what it was, that it wasn’t the end of the world for me, and that it wasn’t made up. I learned so many things that weekend. I learned about vWD. I learned that real people had this disorder and that they were able to live healthy and productive lives. I learned that there were people that actually knew what vWD was (as even after the diagnosis, my doctors still couldn’t tell me what it was, only how to make it so I didn’t bleed).

I’ve now had the opportunity to share my experiences and the experiences of many whom I’ve met with: political and elected officials both here in Utah and in Washington, DC. I remember taking the opportunity at a meeting with my state legislator to explain to those in attendance what it takes for someone with more severe types of bleeding disorders to live and then sharing my own personal experience with surgery costing $250,000, almost all due to the drugs that kept me alive (they took out my left jugular). I still get people who heard me speak in that meeting come up and ask about the effects of a bleeding disorder and what my suggestions are for how they and government can help.

I’ve learned so much from my brief time as a member of this community, but I will always be grateful for those of you who, especially at that first von Willebrand conference, took the time to help me understand what I had and how to handle this new pathway in my life.