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Living with PNH

Living with PNH

Living with PNH can be difficult. It can take a toll on your body and quality of life, interrupting plans with friends, family, and work. But there is help, with advances in therapies and disease education being made every day. Your doctor may have already performed many tests to make your diagnosis. These tests measure different components of your blood.

The following section of the site offers lifestyle tips that may help you with your daily routine, as well as tips on how to talk to friends and family about your disease.

PNH Quick Facts

PNH is a rare disease that affects approximately 16 citizens in 1 million 1. It can affect men and women of all races and ages but most commonly affects people between the ages of 20 to 40 years old.2

Although PNH is rare, the medical community understands a lot about the way the disease works- and there are doctors who are experienced in treating it. There are doctors who have treated multiple PNH patients and are considered medical experts on this disease. Help is available and these doctors are accessible.


References: 1. Hill, A., Platts, P. J., Smith, A. et al. The incidence and prevalence of Paroxysmal Nocturnal Haemoglobinuria (PNH) and survival of patients in Yorkshire.[Abstract] Blood 2006; 108(11): 290 a.Abstract 985. 2.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.