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 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 happens randomly. It isn’t something you’re born with.
PNH causes red blood cells to be missing a critical proteinproteinsLarge, 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 this protein, 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 treatments, but no cure.
Tips and tools
These visuals can be shared on social media or sent to a friend to help explain PNH. Some could also be printed on a mug or T-shirt to show your support.
Download and print this file to create wallet cards that can help explain PNH more easily to others.
Want more resources like this?
To be connected to a dedicated local resource who can help support daily life with PNH, including sharing tips from the community, tools that may be helpful, and news and information, sign up here.