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How Is PNH Diagnosed?

How Is PNH Diagnosed?

Quick facts about tracking your PNH.
  • Know your lab results and keep track of them
  • LDH is the most important lab value because it measures hemolysis, the underlying cause of health problems in PNH
  • Remember, no one sign, symptom, or lab result defines PNH
  • Tracking symptoms, as well as lab results, is key to PNH success
  • Share any changes you notice in your health with your doctor
  • Don’t be afraid to ask questions!

There’s no one sign, symptom, or lab result that defines PNH. But your doctor will consider all your signs and symptoms, in addition to your lab test results, to get the full story of your PNH.

  • How will my doctor confirm that I have PNH?
    Your doctor will take some of your blood to run a lab test called flow cytometry in order to confirm a PNH diagnosis and examine your clone size.

You may have heard your doctor use the term “clone size.” This refers to the percentage of red blood cells in your body that are affected by PNH. A larger clone size means you have more PNH cells, but even small clone sizes can lead to PNH-related health problems.

Learn from real-life PNH patients

Diagnosing PNH can be challenging

Batina's experience video

Because the signs and symptoms of PNH are often similar to other diseases, PNH can be tough to diagnose. For many years, Batina’s disease progressed before she was finally able to
give it a name.

Know your signs and symptoms

When you track your signs and symptoms over time, you and your doctor can be more aware of changes in your health.

So take note of how you’re feeling and share it with your doctor. And remember, always contact your doctor if you have any sudden changes to your health. Find helpful tools to take control and help track PNH on this website.

Know the full story

At times, you may be feeling better, but your lab results won’t show improvement. The reverse of this can also happen.

No one sign, symptom, or lab result defines PNH. This is why it’s important to keep a close watch on all three. It’s the best way for you and your doctor to understand the full story of what’s going on with your PNH.

Next: How is PNH managed?

MYTH: My PNH is only bad when I don’t feel well

With PNH, you can have serious health problems even if you feel fine. Be aware of how you’re feeling and let your doctor know. This will help you both manage your PNH in the best way possible.

TRUTH: Less hemolysis can result in improved symptoms and better quality of life

Because most of the dangers of PNH are caused by ongoing hemolysis, lowering it is a primary goal of managing PNH. Speak with your doctor about what you can do to make this happen.

When you deal with PNH every day, you can start to get used to feeling its symptoms. They may even start to feel “normal.” That’s why it’s important to track your signs and symptoms, so you can tell if they’re getting worse over time. Speak with your doctor about available options — you shouldn’t have to feel like being sick is normal.

Learn more

Always there through the ups and downs

Call OneSource™ at 1.888.765.4747 to get personalized support and encouragement from a registered nurse as you manage your PNH.