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Signs & Symptoms

Signs and Symptoms

Is what you’re feeling PNH?

PNH symptoms can change over time, and are different from person to person. This list will help you identify some symptoms you might have. Don’t be shy! Let your healthcare team know how you’re feeling — it’s an important part of managing your PNH.

Signs and symptoms of PNH 1,2

  • Feeling exhausted
  • Feeling weak all over
  • Trouble starting or finishing things because I’m tired
  • Need to sleep during the day
  • Needing help doing usual activities
  • Limiting social activities because I’m tired
  • Trouble taking long walks
  • Short of breath
  • Fainting
  • Yellowish skin, eyes (jaundice)
  • Trouble sleeping
  • Not feeling hungry
  • Feeling nauseous
  • Pain associated with blood clots
  • Having dark urine
  • Having abdominal pain
  • Having erectile dysfunction
  • Trouble swallowing
  • Back pain

You may experience one or more of the symptoms listed above quite frequently or just occasionally. However, you may not immediately feel other potential complications, such as blood clots and vital organ damage.

References: 1. Brodsky RA. Paroxysmal nocturnal haemoglobinuria. Hematology : Basic Principles and Practice. 4th ed. Philadelphia, PA : Elsevier Churchill Livingstone ; 2005: 419-427. 2. Moyo VM. Natural history of paroxysmal nocturnal haemoglobinuria using modern diagnostic assays. Br J Haematol. 2004; 126:133-138.7