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:
PNH is not cancer.
PNH is a rare blood disease. Blood cells originate in bone marrowbone marrowThe soft fatty tissue inside certain bones that houses stem cells, some of which will ultimately become blood cells. Bone marrow provides the nutrients and environment needed for blood cells to be created. Once these cells are fully mature and ready to go to work, they leave the bone marrow and enter the bloodstream.. While there are diseases involving bone marrow that are cancer, such as leukemia, PNH is not one of them. Doctors who specialize in treating PNH may also treat people with cancer or work at centers that focus on treating people with cancer, but PNH should not be confused with cancer.
Most people with PNH have a normal life expectancy.
Since the introduction of PNH treatments over a decade ago, most people with PNH who do not develop additional complications have a normal life expectancy. Life expectancy can be impacted by the development of blood clots or other disorders.
PNH doesn't have to mean always saying "no"
Many people with PNH have found ways to continue doing the things they love. A helpful first step can be determining what activities are most important to you so you can discuss these needs with your doctor.
You may be able to have children.
Women who are pregnant and have PNH have a higher risk of blood clots. If you are planning a family, you should speak with your doctor to determine if it’s safe. If you and your doctor decide a pregnancy is safe for you, you can work together to develop a plan to help address any risk or complications. This may include additional treatments.
PNH is not inherited and can’t be passed on to others.
PNH is “acquired,” which means the genetic mutations responsible for the disease happen during your life. You are not born with them, and you cannot pass them on to others.
Everyone’s experience with fatigue is different.
Fatigue is often the most challenging symptom impacting daily life. However, everyone’s experience is unique … and the same person may have different symptoms at different times. For some, symptoms are mild and manageable. For others, they may be severe.
Your doctor is the best place to turn.
PNH is a complex disease that impacts each person differently. Your doctor is always the best resource for medical advice and can provide the most accurate information about possible treatments.
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.