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Living with PNH

Information, shared experiences and research connections for people living with PNH and those who support them.

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Understanding PNH

PNH is a rare blood disorder in which red blood cells break down too early, and the body may also have trouble making healthy blood cells.

It is acquired, not inherited: gene changes (usually in the PIGA gene) happen during a person's lifetime in blood-forming cells, and symptoms often come in episodes that infection or physical stress can trigger.

Signs & symptoms

Symptoms vary and may come and go in episodes.

  • Tiredness, weakness or pale skin from anemia
  • Dark urine, often most noticeable in the morning
  • Shortness of breath or a fast heartbeat
  • Belly pain, back pain or headache
  • Easy bruising or bleeding
  • Blood clots in the veins

Tell your care team about new or changing symptoms.

Diagnosis

  1. Talking about symptoms

    Your provider reviews your history, such as episodes of dark urine, tiredness or blood clots.

  2. Blood and urine tests

    Tests may include a complete blood count, tests that show red blood cell breakdown (hemolysis), and a urine test for hemoglobin.

  3. Flow cytometry

    This special blood test checks whether certain protective proteins are missing from the surface of blood cells.

Care & treatment

Monitoring
Regular checkups and blood tests help your team track anemia, blood counts and problems such as blood clots.
Treatment
Depending on your needs, care may include medicines that block red blood cell breakdown or calm the immune system, transfusions, iron or folic acid, or blood thinners.
Your plan
A bone marrow (stem cell) transplant may cure PNH for some people, but it carries serious risks and is not right for everyone.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Tracking patterns can help you and your team understand your episodes.

  • Note when dark urine happens, along with any recent illness, infection or stress.
  • Keep a record of blood test results, transfusions and any blood clots.
  • Write down new symptoms like belly pain, headaches or shortness of breath to share at your next visit.
Bring these questions to your next doctor visit
What do my latest blood counts and hemolysis tests show?
What signs of a blood clot or worsening anemia should make me seek care right away?
Which treatment options fit my situation, and what follow-up will I need?
Sources: NIH GARD — PNH · MedlinePlus Genetics — PNH · MedlinePlus Encyclopedia — PNHPage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

You are more than your diagnosis

Perspectives from people navigating life with PNH.

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Explore research for PNH

Explore actively recruiting PNH studies with HealthSpark.

HealthSpark

Find actively recruiting studies for PNH with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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