Living With A Chronic Illness: My New Health Journey So Far
Recent diagnosis and treatment
About 3 months ago, I was diagnosed with a rare, life-threatening blood disease called PNH.
PNH stands for Paroxysmal Nocturnal Hemoglobinuria.
The simplest explanation/description of it is that I have a bone marrow dysfunction that creates abnormal red blood cells, and then my body destroys red blood cells faster than it can make new ones.
So, basically, I am at a constant deficiency of healthy red blood cells, and there is less oxygen in my blood getting to where it needs to go.
It is important to note that PNH is NOT inherited and is an acquired disease diagnosed through a specific blood test called flow cytometry.
While PNH is said to be incurable, technically, it can be “cured” by doing a complete bone marrow transplant. However, this is massively hard on your body and comes with huge risks (high doses of chemotherapy and/or radiation to kill your bone marrow, then spending weeks in the hospital because you have basically no immune system, potential infections, and additional diseases, plus several more months of recovery at home).
A full bone marrow transplant is a last resort option, used for those whom meds don’t work and their…
