Signs & symptoms

  • Fatigue

  • Headaches

  • Trouble breathing

  • Difficulty exercising

  • Trouble concentrating (often called “brain fog”)

  • Loss of appetite

  • A rapid heartbeat

  • Abdominal and
    chest pain

People with PNH may experience:

  • Bruising or
    bleeding easily

  • Small red dots
    on the skin

  • Blood clots

    (approximately 15%-30% of people with PNH develop blood clots, especially in the veins)

  • Blood in urine

The spectrum of symptoms

PNH impacts each person differently, with some finding the fatigue doesn’t greatly impact their day-to-day life. For others, fatigue can be more challenging to manage.

Perspectives from people living with PNH

  • “These days, I do not experience daily fatigue.”

    – Anita

  • “Fatigue doesn’t impact me much.”

    – Margarita

  • “I’ve had it for almost half my life. It’s just become my new normal.”

    – Daniel

  • “I definitely notice that ‘brain fog’ so many people describe and have a harder time focusing and remembering things.”

    – Leslie

  • “I have to plan ahead and limit what I can do every day. If I overextend myself, even a little, the next two to three days are even more tiresome. Housework, grocery shopping, EVERYTHING 'normal' is impacted by this.”

    – Renee

  • “My symptoms ebb and flow … and treatment doesn’t necessarily equate to ‘feeling normal’ again.”

    – Amanda

  • “Fatigue is a constant battle. I have learned to grieve the loss of a normal quality of life and move forward with my fatigue. My employer is unaware of my condition, so outside of the physical effects of fatigue, it’s exhausting to pretend that the fatigue isn’t there in order to fulfill the roles required of my job.”

    – Emily

  • “Fatigue has prevented me from enjoying things I love as well as missing many of my children’s activities. There are days I can easily sleep 12 hours, get up and eat, and go back to bed. It feels as though I sometimes sleep life away.”

    – Sara

  • “Even though we may be on a medication, some of us are still suffering from crippling side effects of PNH.”

    – Jessi

Connect with other members of the community on our Facebook and Instagram pages, where you can explore different perspectives on fatigue.