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Who Gets PNH?
Who Gets PNH?
PNH is a rare disease, but that doesn’t mean you’re alone. It affects about 8,000 to 10,000 people in North America and Western Europe.
- Both men and women can get PNH
- PNH occurs across all races
- PNH can occur at any age; the average age at diagnosis is in the early 30s
No one knows what causes PNH. It is an acquired disease, which means it develops in some people over time. PNH is not contagious, and PNH is not genetic, so it is not inherited from a family member and cannot be passed on to children.
Is PNH the same for everyone?
PNH comes with a wide range of signs you can see and symptoms you can feel—and even some symptoms you can’t feel. Everyone is different, so people with PNH may experience different signs and symptoms.
In addition, the signs and symptoms of PNH are often similar to other diseases. This is what makes PNH tough to diagnose. There’s no one sign, symptom, or lab result that defines PNH. Your doctor will consider all your signs and symptoms, in addition to your lab test results.
Keep track of how you are feeling using the Symptoms Checkup Chart.
Record your symptoms, and track your lab results — including LDH levels. This tool can help you and your doctor monitor PNH. Bring it with you on every visit.
Patient/Doctor Discussion Guide
Write down any questions you want to discuss with your doctor to help you remember them at your next visit. You can also make notes to refer to later when talking with your family or friends.
Other bone marrow failure disorders
Aplastic anemia (AA) and myelodysplastic syndromes (MDS) are also bone marrow failure disorders. Unlike PNH, AA and MDS don’t destroy red blood cells. Instead, AA and MDS cause your body to make fewer healthy ones. Both these diseases, as well as PNH, can lead to anemia, but in different ways. If you have AA or MDS and PNH, ask your doctor about available options for each of these conditions.
Call OneSource™ at 1.888.765.4747 for more information about PNH and personalized support from a Nurse Case Manager.