Helping others understand
PNH is not a disease you’re likely to hear about in TV commercials or from other people. The science of PNH is complex, and the symptoms can be hard to see. So how do you easily explain it to others?
Here are a few quick facts to help tell the story:
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, chronic blood disease in which the body attacks and destroys its own red blood cells.
It’s caused by a change in the body’s DNA, known as a genetic mutation.
This change is acquired, meaning it happens randomly. It isn’t something you’re born with.
PNH causes red blood cells to be missing critical proteinsproteinsLarge, complex molecules that play many important roles in the body and can be thought of as the “workhorses” of cells. Proteins are required for the structure, function and regulation of the body’s organs and tissues. responsible for protecting them from attack by the immune systemimmune systemA sophisticated defense network used to protect the body from dangers like disease and infection..
Without these proteins, the immune system sees the red blood cells as foreign invaders, and attacks and destroys them.
When there are not enough red blood cells to carry oxygen around the body, the lack of oxygen causes many of the symptoms of PNH.
The symptoms are different for everyone, but can include fatigue, weakness, headaches, shortness of breath and other symptoms, including chest pain and abdominal pain.
There are medications that treat PNH, but they do not cure the disease.
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 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.
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.
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.
To see how ongoing PNH symptoms might be impacting your daily life, checkout out our symptom questionnaire. This interactive tool can help you identify how you’re feeling so you can share it with those around you.
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.
Download and print this file to create wallet cards that can help explain PNH more easily to others.
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