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Is there a test for PNH?

PNH patient portrayal

Yes. If you show signs of hemolysis , your doctor may request a high-sensitivity flow cytometry test.1 Using a small sample of blood taken from your arm, this test measures the number of blood cells affected by PNH , also known as your clone size . A larger clone size means you have more PNH blood cells, but even small clone sizes can lead to PNH-related health problems.2 Your clone size may grow over time, so symptoms can get worse over time too.

How will my doctor monitor my PNH?

PNH patient portrayal

To monitor and track your PNH, your doctor will consider all of your lab test results, signs, and symptoms, which may vary from what other people with PNH experience. Because everyone is different, how they experience the disease might be different too. No single sign, symptom, or lab result defines PNH.4-8

Some lab tests that your doctor may order include lactate dehydrogenase (LDH) level; complete blood count (CBC) measurements— red blood cells (RBCs) , white blood cells (WBCs) , and hemoglobin (Hgb) ; and flow cytometry .1,5,9-12

Click on a word that is underlined with a light dotted line and an explanation of that word will appear.

Learn , what high sensitivity flow cytometry is, and why this test is used in PNH patients, from Dr. Ellen W. Friedman, a doctor of blood and blood diseases.

Listen as Victor, a patient, discusses his experience with PNH.

A nurse case manager from OneSource™ can provide support, information about PNH, and useful tools to help you manage your disease.

References: 1. Borowitz MJ, Craig FE, DiGiuseppe JA, et al; for Clinical Cytometry Society. Cytometry Part B. 2010;78B:211-230. 2. Lee JW, Jang JH, Kim JS, et al. Int J Hematol. 2013;97:749-757. 3. Richards SJ, Barnett D. Clin Lab Med. 2007;27:577-590. 4. Hill A, Rother RP, Wang X, et al. Br J Haematol. 2010;149:414-425. 5. Parker C, Omine M, Richards S,et al; for International PNH Interest Group. Blood. 2005;106:3699-3709. 6. Meyers G, Weitz I, Lamy T, et al. Blood. 2007;110: Abstract 3683. 7. Nishimura J-I, Kanakura Y, Ware RE, et al. Medicine. 2004;83:193-207. 8. Hill A, Richards SJ, Hillmen P. Br J Haematol. 2007;137:181-192. 9. Hill A, Kelly R, Hillmen P. Blood. 2013;121:4985-4996. 10. Mohanty BD, De Castro CM. Am J Med. 2012;125:243-245. 11. Urbano-Ispizua A, Schrezenmeier H, Muus P, et al. An International PNH Registry study. Blood. 2011;118: Abstract 2102. 12. Lee JW, Jang JH, Lee JH, et al. Haematologica. 2010;95(s2):205-206.