My name is Amanda. I am interning at the Association right now and this blog is one of my projects! We are hoping to collect stories from various people in our community and post them here. We want to "stitch" together our stories from different backgrounds and points in our lives, so we can witness how the common thread of a bleeding disorder unites us all.
Part of telling my story involves telling my brother's story as well. Personally, I am not a bleeder, but I grew up with a little brother, Anthony, who had endless bloody noses. Before he was diagnosed, there were a lot of scary times in our family. I have some pretty specific memories of sitting next to him while he pinched his nose after bleeding for hours, until blood was in his tears, and watching my parents exchange worried looks as they tried to figure out the next step to take. I know one time my dad had to pick him up from daycare, and when he carried Anthony into the emergency room, the nurses immediately asked who had been shot because there was so much blood. He had blood drawn for testing so many times that he became terrified of needles and it would take several nurses to hold him down for a shot. None of us knew what was happening. The doctors had his nose cauterized seven to ten times in just a couple years. In case you don't know, that is when they basically burn shut a blood vessel in your nose. He was just a little kid and this procedure was done so many times that he how has a deviated septum. Finally, when Anthony was in the emergency room once again, my mom overheard a nurse ask the doctor if he had "von willebrand's disease". The doctor replied no. My mom went home and looked up the disease herself and found the symptoms matched up with my brother's symptoms quite well. She brought it up with our doctor, he was tested, and he was diagnosed with vWD. Now, our family is much more educated about how to take care of him and he has access to treatment that has improved his life significantly. Not only that, but we started to get involved with the Arizona Hemophilia Association, which is where I learned a lot more about this community!
|My mom, brothers, and I|
|Hemophilia Walk 2009|
|Camp HONOR 2012|