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Learn more about PNH

Being diagnosed with PNH (paroxysmal nocturnal haemoglobinuria) can be a life‐changing event. But as difficult as this news can be, it is important to realise you are not alone.

Though PNH is a rare disease,1 there are others who understand what you are going through. A worldwide network of concerned physicians, nurses, and researchers are working hard to find new treatments and deliver the best possible care for patients with PNH. The Internet can be a great resource in helping you to find information, support, and a sense of community with others who share the PNH diagnosis.

About PNH

 


Living with PNH

 


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

PNH Quick Facts

When PNH was first named, not much was known about it. The name literally means episodic haemoglobin (a component of blood) in the urine, which occurs at night. But actually, less than one third of people with PNH experience haemoglobin in their urine at diagnosis.2 In fact, PNH is a complex disease that affects many parts of the body and haemolysis (the destruction of red blood cells) does not only happen at night — it happens all the time.


Be sure to bookmark PNHSource.eu and check back often as the site continues to expand its comprehensive offering of information and resources for the PNH community.


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. Dacie JV, Lewis SM. Paroxysmal nocturnal haemoglobinuria: clinical manifestations, haematology, and nature of the disease. Ser Haematol. 1972;5:3-23.

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