Some of the challenges of PNH
The most common treatments available today are called C5 inhibitors and are given by infusion.
C5 inhibitors only address intravascular hemolysis (IVH), not extravascular hemolysis (EVH). This can lead to ongoing hemolysis and lower-than-normal hemoglobin levels.
You may still need red blood cell transfusions
Ongoing hemolysis is a sign that your PNH may not be fully controlled
Most PNH treatments require infusions
Most treatments require scheduled infusions or hospital and clinic visits, which can cause people to miss out on important moments and activities.
You may feel like your only choice is to cope in silence or manage on your own. But that doesn’t have to be the case. Speaking up about your struggles to others can help you feel more supported.
Here's what you can do now
EVH, extravascular hemolysis; IVH, intravascular hemolysis; PNH, paroxysmal nocturnal hemoglobinuria.