Friday, August 31, 2012

Amanda's Story

Hello, friends. :)
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.

My story:
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
I started going to Camp HONOR with Anthony when I was fifteen. Actually, my mom had to convince me to go. I have always been shy, so the idea of spending a week in a cabin with people I have never met was not high on my list of summer activities. But I went.. And it made my life spectacular. The girls in my cabin were great and everyone was unbelievably welcoming. Even though a lot of people had known each other since they were very young and had been going to camp a long time, they still welcomed me as part of the family. It is amazing to think it has been over five years since that first week! Since then, I have gone to six annual meetings, volunteered at the salsa challenge several times, fundraised for the hemophilia walk, and learned an incredible amount of information about bleeding disorders. This community has provided my family with innumerable opportunities. In my case, I am now part of NYLI, a leadership program with the National Hemophilia Foundation, and I have had the chance to go to the national meetings and DC. Also, I was an intern for the Bayer pharmaceutical company this summer and got to visit New Jersey and NYC!

Hemophilia Walk 2009
When I went to college three years ago, I had no idea what I wanted to study or do with my life. I chose biology because I thought about doing genetics research and I am passionate about science. However, I have come to realize that some of the happiest times of my life have been at camp. When I am high-fiving those adorable girls and silly boys, we are always smiling together. They rock. :) And they are the reason I am going to get my master's in public health. Someday, I want to bring those smiles to kids struggling in developing countries, where treatment for diseases like hemophilia is scarce. This community has inspired me and given me direction.

Camp HONOR 2012
Right now, I am going to the University of Arizona and about to graduate in December with a degree in molecular bio and a minor in public health. I will be applying for grad school this month, so I am pretty busy and nervous! I adore my two little brothers (yes, Anthony, you will always be little, no matter how tall you get) and am close with my parents; they have all always given me support and I am so lucky. I love Tucson, but am excited for what next year will bring. I want to join the Peace Corps. I love running and doing anything outdoors and finished my first half marathon last semester. I never leave the house without a book, and am currently hooked on the Game of Thrones series. ;) I think ice cream and rain complement each other perfectly. Someday, I hope I will be part of an international non-profit that specializes in chronic diseases, but we will see where life takes me.

Bayer Internship
So that is it.. I did not realize I had so much to talk about! Please contact me (or anyone at the office) if you would like share a story of your own. It can be however long or short you want. No matter the age of the storyteller, we love to learn more about our community members! My email:

1 comment:

  1. Amanda! Thank you for sharing your story. What an inspiration you are! We are so happy to have you as part of our team :)

    Melinda "Mac"