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PNH Symptoms

PNH can cause variety of symptoms. These can vary greatly from person to person. You may have many symptoms, or just one or two. And you may get a new symptom at any point in the course of your illness. The severity and number of symptoms are often related to the size of your PNH

Support

Because patients need help in different ways, we offer a variety of support services. From the patient/family HelpLine and support networks to live conferences, online classes and volunteer events, our aim is to positively impact as many lives as we can. Our community members contribute to that goal by sharing their own inspirational Stories of Hope, supporting each other's need to stay positive and motivated.

Education

Diseases like aplastic anemia, MDS, and PNH are rare and difficult to understand.  Patients who learn about their condition can take an active role in their treatment by asking good questions of their medical team and advocating for their own needs

Paroxysmal Nocturnal Hemoglobinuria (PNH)

PNH, or Paroxysmal nocturnal hemoglobinuria is an ultra-rare bone marrow failure disease in which red blood cells break apart. Normal red blood cells have a shield of proteins that protect them from coming under attack by the body's own immune system. PNH occurs because that protein shield is missing. PNH is often associated with reduced bone marrow function (low blood counts) caused by aplastic anemia.

MDS Types

MDS classification systems divide MDS into subtypes based on the results of blood and bone marrow tests. Scoring systems such as IPSS and IPSS-R have been developed to determine the severity of the MDS, probable survival term, and the risk of MDS developing into