Thursday, April 21, 2016

A little Back Story Before We Begin...

By this time, you may already know who I am, what I do, and where I'm going. Well, that's great because I sure as hell don't! What I do know, and which you may not, is what started this journey for me. I was born with a rare genetic blood disorder. Congenital Dyserythropoietic Anemia Type II to be exact. (But we'll call it CDA for short) we didn't know it then, but we do now (more on that later). Not until the age of 24 did I get a confirmed diagnosis. Let me tell you, I've been misdiagnosed up and down. I don't fit the mold. I still don't.

The year is 2012. I had just contracted a deadly bacterial infection the year before and it nearly killed me, no joke. Campylobacter is what I had and it went straight to my mediport in my chest, and attacked my heart. After that, I went into a medical depression. Life, despite being alive, wasn't motivating me. I felt defeated, depressed. I remember crying in the night feeling isolated and alone. Out of desperation, I sought comfort the only way I knew how: applied research methods.

I had dropped out of university due to illness because the major I was in required me to interact with children for several hours a few times a week. For an immunio-compromised chronic patient, I couldn't do it. CSU school systems are not geared towards a chronically ill college student. (But that's a different story) Before leaving university, I had already acquired several Associate's Degrees.  I HATED Research Methods class for Psychology. Because it was complex, no real answers, and you were left with more questions. In the real world though, I apply what I learned and have done well so far.

In my desperation, I looked to a medical message board for answers. There was a girl that was exhibiting symptoms similar to mine, and was asking the public their opinion on having her spleen removed. Mind you, this message was nearly 2 years old with no recent activity, no contact information, nothing but a username. Well, I figured, if I use the same username for all my accounts, maybe this person does also. I cross referenced the username against all major social media platforms. One came up: Instagram. It turns out "vixensly3" was really Emily.

I left a cryptic comment, innocent enough to the public eye, but intended for her on a photo of some energy crystals. My comment was simply "Do the letters CDA mean anything to you?" The rest was history. She replied "Yes, I think I have that! What do you know about it?" We then contacted one another, she's younger than me by four years and was just coming into her illness and understanding it. I saw this as an opportunity to mentor, guide and help navigate the world she was about to dive into. More importantly to me, this gave my life a purpose. Finally, all the pain and suffering I had endured growing up can be used to spare her the heartache of going through the same. She felt the way we found one another was remarkable, and we both felt like for the first time in our lives we were not alone. If two people felt this way, imagine what finding others with rare blood disorders would feel like. This is how the HemoAwareness Project was born.