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What is PNH?

Start Learning — and Change the Way You See PNH

Quick facts about PNH.
  • PNH is serious. It starts with your blood, but it can affect your entire body
  • PNH is dangerous. If you don’t take care of PNH, it can lead to serious health problems, including some that can be life threatening
  • PNH is constant. Even though you can’t see it, hemolysis is always happening
  • PNH is manageable. In fact, managing PNH is vital. And there are options. Speak with your doctor to find out what’s right for you

Find answers to your questions here

PNH is a serious and unpredictable disease.

It comes with a wide range of signs and symptoms that are often similar to other diseases. As a result, everyone experiences PNH differently, making it tough to diagnose.

But PNH is also manageable and there’s a lot you can do. Understanding the disease is the first step toward taking control.

What is PNH?

PNH is an acquired disease that destroys an important part of your blood: the red blood cells. Red blood cells develop in your bone marrow. They’re important because they help deliver oxygen and remove waste from your body.

What does PNH do?

With PNH, some or all of your red blood cells are destroyed. This is called hemolysis.

In PNH, it happens constantly and at high rates, which could put you at risk. Hemolysis is the main cause of the major health problems in PNH, including the most severe.

  • In PNH, hemolysis happens all the time
  • Ongoing hemolysis happens to people with PNH because some or all of their red blood cells are missing an important protective protein
  • Your body’s defense system attacks red blood cells without this protein
  • PNH is progressive. This means your disease can get worse over time, increasing your risk of major PNH health problems

What are the risks of having PNH?

The biggest risk of PNH is that you cannot always see or feel its effects. So serious health risks can take you by surprise. If left unaddressed, PNH can lead to:

body organs
  • Blood clots:
    These form when parts of your body’s blood clump together. Clots can block veins and arteries and lead to heart attack, stroke, and organ damage, as well as other problems
  • Kidney damage:
    Almost 2/3 of people with PNH have chronic kidney disease
  • Fatigue:
    Hemolysis affects the way oxygen gets delivered throughout your body. This can make you feel weak and tired to the point where once normal, everyday activities become a struggle
  • Lung problems:
    Lung problems can be caused by pulmonary hypertension. This can lead to shortness of breath and other serious health problems

What can I do about it?

PNH can be life threatening. But with the correct management, people with PNH can live long, full lives.

It’s important to explore your options and address PNH early — and aggressively. By working closely with your doctor, you may be able to keep the risks of PNH at bay.

Actively managing your PNH can go a long way.

Helpful resources: Use these downloadable tools to help you take control.

PNH starts with your blood, but it can affect your entire body. If you don’t take care of it, PNH can lead to serious and sometimes life-threatening health problems.

Next: What causes PNH?

PNH stands for paroxysmal nocturnal hemoglobinuria. The disease was called this before much was known about it. Today, more is known about the disease, but doctors still call it PNH. So the name is misleading.

Here's why:

Paroxysmal

MYTH: The disease comes and goes

TRUTH: PNH is always present and hemolysis is always happening, whether it flares up or not

Nocturnal

MYTH: PNH happens at night

TRUTH: The effects of PNH don’t just happen at night — they happen all the time

Hemoglobinuria

MYTH: Hemoglobin found in urine is the main part of PNH diagnosis

TRUTH: Not everyone with PNH has dark-colored urine when diagnosed, though most will experience it at some point

Get to the bottom of blood clots

Hemolysis can put you at greater risk of having a blood clot.

With PNH, blood clots:

  • Can occur at any time, and can happen with any size clone
  • Can be life threatening — even the first time you experience one
  • Occur most often in the legs and lungs

Speak with your doctor about finding an approach to reduce your risk of blood clots.

Have more questions?

Call OneSource™ at 1.888.765.4747 to speak one-to-one with a Nurse Case Manager.