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Talking to Others

Communicating with Others About PNH

Talking about your disease may help ease the burden
If you have recently been diagnosed with paroxysmal nocturnal haemoglobinuria (PNH), here’s why talking to others about your disease might be important.

  1. Help with daily tasks. PNH can drain the energy you need for everyday activities. Don't be afraid to ask for help.
  2. Emotional support. Dealing with a chronic disease is something that requires a great deal of emotional support. Ideally, by explaining your disease to your loved ones, they can better understand what you are going through.

Here are some suggested responses to potential questions about PNH that may be especially helpful when talking with your family and friends.

  1. Is PNH hereditary?

    PNH is not an inherited disease. Just because you have it does not mean that another member of your family will have it or develop it.1

  2. Can I catch or spread PNH?

    PNH is not contagious. No one can get PNH from being in contact with you.1

  3. What is PNH?

    PNH is an acquired mutation that causes some or all of your body’s red blood cells (RBCs) to be destroyed by a process called haemolysis.2,3,4 PNH is a complex disease with signs and symptoms that are nonspecific, unpredictable, and often similar to those of other diseases. In addition, PNH presents uniquely in each person. If you have PNH, some or all of your RBCs may be missing an important protective protein. Without this protein, RBCs are prone to destruction by a part of your body’s defence system called complement.2,3,4

  4. Why does PNH make me so tired?

    Haemolysis, the constant destruction of red blood cells (RBCs), can cause, among other things, tiredness (fatigue) because the destroyed blood cells lose their ability to carry oxygen to parts of the body.1

  5. Why are my symptoms so inconsistent? Some days I feel fine, and others very bad.

    If you have PNH, chronic haemolysis is always taking place — whether you feel OK or whether you’re having a flare-up (paroxysm), such as during times of stress or infection.3,5 PNH is a complex disease with signs and symptoms that are nonspecific, unpredictable, and often similar to those of other diseases. Symptoms can change over time, and vary from patient to patient.

    In addition, people with PNH may have other medical conditions that affect the function of their bone marrow such as aplastic anaemia (AA) or myelodysplastic syndromes (MDS). Unlike PNH, which destroys RBCs, these diseases may reduce the production of blood cells and further complicate PNH.1,3 All of these contributing factors can make your symptoms inconsistent.

  6. Is PNH a terminal disease?

    PNH is a serious disease that should be addressed as quickly as possible. It can lead to life-threatening complications such as blood clots and damage to vital organs if not effectively treated.2,3 As with other chronic diseases, there are many things that can help manage PNH as part of your life.

    Remember that you are not alone. The more people you tell about your diagnosis, the more people you will have available for support when you might need it. You may also want to direct your support team to this website to learn more about PNH.

References: 1.Socié G, Mary J-Y, de Gramont A, et al, for the French Society of Haematology. Paroxysmal nocturnal haemoglobinuria: long-term followup and prognostic factors. Lancet. 1996;348:573-577. 2. Hillmen P, Lewis SM, Bessler M, Luzzatto L, Dacie JV. Natural history of paroxysmal nocturnal haemoglobinuria. N Engl J Med. 1995;333:1253-1258. 3. Brodsky RA. Paroxysmal nocturnal haemoglobinuria. In: Hoffman R, Benz EJ Jr, Shattil SJ, et al, eds. Hematology: Basic Principles and Practice. 4th ed. Philadelphia, PA: Elsevier Churchill Livingstone; 2005:419-427. 4. Nishimura J-I, Kanakura Y, Ware RE, et al. Clinical course and flow cytometric analysis of paroxysmal nocturnal haemoglobinuria in the United States and Japan. Medicine. 2004;83:193-207. 5. Nakakuma H. Mechanism of intravascular haemolysis in paroxysmal nocturnal haemoglobinuria (PNH). Am J Hematol. 1996 ; 53 (1): 22‐29.