PNH, or paroxysmal nocturnal hemoglobinuria, is a rare disease caused by a bone marrow defect. Due to this, red blood cells lack certain important protective proteins.
What happens to red blood cells that lack certain protective proteins (CD55 and CD59)?
When your red blood cells lack protection, they can be left vulnerable and mistakenly attacked by the immune system. This is called hemolysis.
There are two types of hemolysis
Intravascular hemolysis (IVH) which happens in your blood vessels
Extravascular hemolysis (EVH) which happens most commonly in your liver and spleen
In PNH, as red blood cells are destroyed, hemoglobin (Hb) levels decline.
Hemoglobin is an important protein found in the blood that carries oxygen throughout your body.
The signs and symptoms of PNH may vary and can impact how you feel on a daily basis.
“I would describe my PNH as unpredictable. I can't say from day to day how I'm going to feel when I wake up in the morning.”
— Person living with PNH
This person quoted above was compensated for their time during the interview