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.