Living With A Chronic Illness: My New Health Journey So Far

Recent diagnosis and treatment

Photo by Cassi Josh on Unsplash

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 symptoms continue to worsen.

In terms of rarity, some sources say that 6 people in every 1 million get it; others and some specialists have said it is less than that, even just 2 people per million.

Either way, without treatment, it is fatal (not immediately — life expectancy before treatment options existed was 10–20 years).

Luckily, there are now approved medications to treat PNH — but it is recent! The first ever med for it was Soliris, approved in 2007 in the US.

What medications treat PNH?

According to NORD:

“In 2007, the U.S. Food and Drug Administration (FDA) approved eculizumab (Soliris) as a treatment for PNH. This is the first drug to be approved for this disorder. Eculizumab does not cure PNH but halts the breakdown of red blood cells and can reduce the risk of thrombosis and improve overall quality of life…