Breaking down the facts on PNH

Most people have never heard of paroxysmal nocturnal hemoglobinuria, or PNH, because it's a rare disease that affects only about 0.5 to 1.5 people per million! It's caused by a genetic mutation in the stem cells of the bone marrow. This mutation causes the stem cells to mature into abnormal red blood cells called PNH red blood cells. These blood cells lack a protein that protects them from the complement system, which attacks and destroys them. This process is also known as complement-mediated hemolysis.

PNH is an acquired disease, which means it's not hereditary, but it can develop at any time during life.

Almost 200 Canadians are living with PNH

It is usually diagnosed in young adults, around early to mid 30s

PNH affects all ages and ethnicities

PNH occurs equally in males and females

Paroxysmal = "sudden and irregular"
Nocturnal = "at night" (due to the fact that dark urine is frequently noticed at night or in the early morning, which is when urine is typically more concentrated)
Hemoglobinuria = hemoglobin (a protein in red blood cells) in the urine that makes it appear dark

Although PNH gets its name from the common observation of dark urine at night or early in the morning, we now know that it is much more than that. People with PNH can experience different symptoms at any time of day.