Speaking up about symptoms

A man sits on a picnic blanket observing other people playing soccer.
  • Symptoms don't have to be “normal”

    While treatments have improved the lives of many, it’s not always true for everyone. Persistent symptoms may be a sign of ongoing hemolysis, not just “part of everyday life.” Feeling empowered to share your experiences with your doctor can help important clues come to light.

  • Tell your doctor how you really feel

    The members of your healthcare team are your partners. To effectively treat your PNH, they need to truly understand how you’re feeling. Sharing how you feel honestly, without holding anything back, is an important part of that partnership.

  • Share the clues of ongoing hemolysis

    PNH symptoms hold important clues for your doctors and they could be a sign of ongoing hemolysishemolysisThe “breaking apart” of red blood cells. It can occur when the immune system attacks these cells as though they were dangerous viruses or bacteria. When red blood cells break open, hemoglobin is released. Hemolysis causes many of the symptoms of PNH.. You have the power to speak up about your PNH symptoms to help find a path forward.

PNH Symptom Questionnaire

This tool can help you identify how you’re feeling so you can have important conversations with your doctor. Just slide the scale for each question and you’ll get a summary of your personal experience that you can share with others. With your summary, you will also get a helpful discussion guide with additional considerations to help you talk to your doctor about your PNH.

Drag the slider to the number that matches your experience
  • How many days a month do you experience...
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • How many times in the last month did you experience...
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • 0
    1
    2
    3
    4
    5
    6+
  • This field is for validation purposes and should be left unchanged.

These are not all the symptoms you may experience. Every patient’s experience with PNH is unique. Talk to your healthcare provider about questions you may have on PNH, its symptoms, and treatment.

Explore stories from people living with PNH as they share their personal experiences

  • Using his voice to find the right resources


    Eric

    E
  • Using her voice to become an advocate


    Jessi

    J
  • Using her voice to connect with others


    Jillian

    J