Paroxysmal Nocturnal Hemoglobinuria (PNH) | Aplastic Anemia and MDS . . . PNH, or Paroxysmal nocturnal hemoglobinuria, is a rare blood disease that causes red blood cells to break apart Doctors call this breaking apart " hemolysis " It happens because the surface of a person’s blood cells are missing a protein that protects them from the body's immune system
Learn about PNH (Paroxysmal Nocturnal Hemoglobinuria) Recently, there has been increased mention of paroxysmal nocturnal hemoglobinuria (PNH) in the news and on social media As part of our mission, the Aplastic Anemia and MDS International Foundation (AAMDSIF) works with leading PNH specialists to provide patients, their support networks, and the public with trusted and up-to-date educational
Thrombosis in Paroxysmal Nocturnal Hemoglobinuria (PNH): From . . . Paroxysmal Nocturnal Hemoglobinuria (PNH) constitutes a rare bone marrow failure syndrome characterized by hemolytic anemia, thrombotic events (TEs), and bone marrow aplasia of variable degrees Thrombosis is one of the major clinical manifestations of the disease, affecting up to 40% of individuals with PNH
PNH Toolkit - Aplastic Anemia and MDS International Foundation (AAMDSIF) Paroxysmal nocturnal hemoglobinuria (PNH) is challenging for both health care providers and patients to understand and explain It can be overwhelming to be faced with the diagnosis of a rare disease like PNH, so it’s important to have clear descriptions of the disease information you need wherever you are in your PNH journey
PNH Symptoms - Aplastic Anemia and MDS International Foundation (AAMDSIF) 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 clone and how much blood cell destruction is happening
PNH Diagnosis - Aplastic Anemia and MDS International Foundation (AAMDSIF) PNH cells are missing some or all of two proteins on their surface These proteins are called CD55 and CD59 FLAER is a new type of flow cytometry test that is also used Using flow cytometry, your doctor can usually divide your blood cells into 3 types: PNH I cells, or Type I cells: These cells are normal
What are the treatments for PNH? | Aplastic Anemia and MDS . . . PNH is considered a chronic disease meaning that it lasts a long time The only potential cure is a bone marrow transplant (BMT) However, a BMT carries many risks and is not an option for many people Other treatments are designed to ease symptoms and prevent problems These may include:
Aplastic Anemia and MDS International Foundation (AAMDSIF) Aplastic Anemia and MDS International Foundation Serving the aplastic anemia, myelodysplastic disease syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure disease communities, AAMDSIF empowers patients and their families, invests in research that speeds the search for new treatments and potential cures, promotes high-quality care by educating healthcare
Find a Specialist by Postal Code | Aplastic Anemia and MDS . . . Paroxysmal Nocturnal Hemoglobinuria (PNH) Pure Red Cell Aplasia (PRCA) David Araten, MD: NYU School of Medicine : New York City : New York : United States : Paroxysmal Nocturnal Hemoglobinuria (PNH) Mary Armanios, MD: Johns Hopkins University : Baltimore : Maryland : United States