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Diagnosing PNH

Diagnosing PNH

Early Diagnosis Helps Manage PNH

If you’ve recently been diagnosed with paroxysmal nocturnal haemoglobinuria (PNH), you may feel overwhelmed — or even confused, angry, or scared. What is PNH? How and why did I get it? How can I manage it?

PNH can be difficult to detect and sometimes takes years to diagnose. Fortunately, much has been learned about it in recent years and advances have been made in treatment options. These new discoveries can help you and your healthcare team actively manage your PNH — and keep you healthy.

PNH affects different people in different ways and symptoms can vary widely from patient to patient. It is impossible to predict how the disease will progress once it is diagnosed because PNH is so highly variable. Many patients may also have underlying problems with the function of their bone marrow such as aplastic anaemia (AA) or myelodysplastic syndromes (MDS), which may reduce the production of blood cells and further complicate PNH.1,2

Your physician can perform specific tests to check for PNH if it is suspected. Measuring your lactate dehydrogenase (LDH) on a regular basis is one of the best ways to monitor the extent to which red blood cells are being destroyed as a result of excessive haemolysis associated with PNH.2 Complete blood count (CBC) is also an important test that can help lead to a proper diagnosis.2 Your healthcare team may use other tests to evaluate your condition including haemoglobin (Hgb), hematocrit (HCT), platelet (PLTs), and white blood cell counts (WBCs) — which are all part of a CBC — as well as creatinine (CRT) and others. Ultimately, flow cytometry is considered the standard diagnostic test for PNH.2,3

When evaluating PNH, you should consider not only your lab values, but also your signs and symptoms so that you get a more complete picture of your disease. You play an important role in your diagnosis and management of your disease as well. It is critical to discuss all of your signs and symptoms with your healthcare team.

References: 1. Socié G, Mary J-Y, de Gramont A, et al, for the French Society of Haematology. Paroxysmal nocturnal haemoglobinuria: long-term follow-up and prognostic factors. Lancet. 1996;348:573-577. 2. Brodsky RA. Paroxysmal nocturnal haemoglobinuria. Hematology : Basic Principles and Practice. 4th ed. Philadelphia, PA : Elsevier Churchill Livingstone ; 2005: 419-427. 3. Moyo VM. Natural history of paroxysmal nocturnal haemoglobinuria using modern diagnostic assays. Br J Haematol. 2004; 126:133-138.