- Is PNH serious?
Yes. PNH is a serious and unpredictable disease that destroys your red blood cells
- Can my PNH get worse?
PNH is progressive. This means your disease can get worse over time, increasing your risk of major PNH health problems
- What does “clone size” mean?
This refers to the percentage of blood cells in your body affected by PNH
PNH is an acquired disease that destroys an important part of your blood: the red blood cells. Red blood cells develop in your bone marrow. They’re important because they help deliver oxygen and remove waste from your body.
What does PNH do?
With PNH, some or all of your red blood cells are destroyed. This is called hemolysis.
In PNH, it happens constantly and at high rates, which could put you at risk for serious health problems. Hemolysis is the main cause of the major health problems in PNH, including some that are life threatening.
- In PNH, hemolysis happens all the time
- Ongoing hemolysis happens to people with PNH because some or all of their red blood cells are missing an important protective protein
- Your body’s defense system attacks red blood cells without this protein
- PNH is progressive. This means your disease can get worse over time, increasing your risk of major PNH health problems such as chronic kidney disease, blood clots, and other life threatening conditions
Your doctor will order a simple test
To confirm a diagnosis of PNH, your doctor will order a simple blood test called high-sensitivity flow cytometry. This test measures your clone size, the percentage of blood cells in your body affected by PNH. Your doctor typically will order this test after first suspecting PNH based on your signs and symptoms, and other lab test results—especially the level of an enzyme, lactate dehydrogenase (LDH), in your blood. LDH is a measure of hemolysis, the underlying cause of the signs and symptoms of PNH, including the most severe. Even after making a diagnosis, your doctor will continue to monitor your signs and symptoms and ongoing lab test results to track the progression of your PNH over time.
Defining clone size
You may have heard your doctor use the term “clone size.” This refers to the percentage of red blood cells in your body that are affected by PNH. A larger clone size means you have more PNH cells, but even small clone sizes can lead to PNH-related
health problems.
PNH and other bone marrow disorders
Sometimes people with PNH have other bone marrow failure disorders, such as aplastic anemia (AA) or myelodysplastic syndromes (MDS). These work differently from PNH, but can cause similar symptoms, such as anemia. If you have AA or MDS as well as PNH, it’s important to find treatments for each of your diseases. Speak with your doctor about Soliris for PNH and ask him or her about other treatment options for AA and MDS.
