Explaining PNH

Sharing how your symptoms affect you can be tough to explain. Here are a few ideas for how to convey their impact:
  • Fatigue

    It can be helpful to use an analogy that others can relate to, like “Imagine skipping a night of sleep and then going to work the next day” or “Imagine the worst exhaustion you’ve ever felt appearing out of nowhere, but you still have so much to do that day.”



  • Brain fog

    Brain fog is an all-around forgetfulness — forgetting words, tasks, things on your calendar, or why you walked into the living room. Some say that it’s like that moment when you wonder if you turned off the stove or locked the front door … but it may happen more often for people with PNH.



  • Headache

    Everyone knows what a headache feels like, but most don’t have to experience one coupled with other PNH symptoms. It can help to ask someone to name 3 common ailments they dislike most, and then ask them to imagine having all of those at the same time as a headache.



  • Difficulty exercising

    Exercising with a friend is a great way to get through a workout, but some may not understand that you may not be able to keep up with your old pace – or their current pace. To alleviate pressure, it can be helpful to explain in advance that every day is different and it’s important for you to listen to your body.



  • Shortness of breath

    PNH-related shortness of breath can come on suddenly and unexpectedly. Some have said it feels like you just can’t get enough air. Explaining exactly what it feels like for you in honest terms can help others understand.



Tips and tools

Social platforms are a great way to help educate others about PNH. These visuals can be downloaded and shared to help explain PNH to others.








Wallet card

Download and print this file to create wallet cards that can help explain PNH more easily to others.






Access more resources like this

For personalized support with daily life with PNH, including tips from the community, tools that may be helpful, and news and information, sign up here.



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