Taking action is key to fighting PNH

Ongoing hemolysis is the root cause of the signs, symptoms, and serious health problems of PNH.

No one knows what causes PNH. It is an acquired disease, which means it develops in some people over time. PNH is not contagious, and PNH is not genetic, so it is not inherited from a family member and cannot be passed on to children.

Hemolysis happens when red blood cells burst. With PNH, hemolysis is always happening — even if you can’t see or feel it.

And PNH is progressive, which means the disease can get worse over time.

Why is hemolysis so bad?

When red blood cells burst, they release hemoglobin. Hemoglobin is good for the body when it’s inside your red blood cells.

When it’s outside, it is very dangerous and can harm your body in many ways. Over time, it is very dangerous and can build up and cause serious health problems that are hard to predict.

These health problems can include:

• Kidney failure
• Blood clots
• Stroke
• Heart attack
• Damage to organs such as your liver, brain, and lungs

How will I know hemolysis is happening?

You cannot always see or feel hemolysis, which makes it tough to manage. The results of it often can affect the way you feel and live your life.

Left unmanaged, hemolysis can make you feel very tired and weak. It can also lead to signs and symptoms like:

• Fatigue
• Impaired quality of life
• Trouble swallowing
• Stomach pain
• Shortness of breath
• Dark-colored urine
• Erectile dysfunction (ED)

Remember, you didn’t do anything to cause PNH, but there is a lot you can do to manage PNH. With the right approach, people with PNH can live long, full lives.

Next: Who gets PNH?