Living With #CongenitalDyserythropoieticAnemia
I was just a few weeks old when I was diagnosed with this rare blood disorder. As a child doctors told my parents that they weren't sure of the life expectancy of this type of anemia. My bone marrow does not produce enough red blood cells and the red blood cells that are produced have a shorter lifespan. There is still not a lot known of this blood disorder, long term complications are iron overload that causes organ damage over time if not taken care of with iron chelation therapy and given that the heart has to work extra hard to pump blood around my body it takes a toll on the heart, increasing the risk of heart attacks and other heart diseases like heart failure. As scary as this may seem to someone who is normal and healthy it's just an everyday thing in the life of people with this form of anemia. I start my mornings by checking my eyes and skin for pallor and jaundice, sometimes checking my hemoglobin with an at home hemoglobin meter and wonder how the day will go, will this brain fog ever go away or subside? How long will this chest pain last? Will this fatigue and weakness be as bad or better than the days before? How many hours left till I can get some rest again? How soon till my next blood transfusion? Having my spleen removed to try and alleviate symptoms it's always in the back of my mind, wondering if I'll catch a sickness with the flu season coming on or will I manage to escape it for another season. Living with a chronic illness is tough, no matter how many times you tell yourself to shrug it off and stay positive, there's always a little area in your mind where it pops up during random parts of the day leaving you wondering. So with each passing year I'm thankful that I'm able to work and live my life somewhat normally.