Diseases & Conditions


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Paroxysmal Nocturnal Hemoglobinuria


Synonyms of Paroxysmal Nocturnal Hemoglobinuria
  • Marchiafava-Micheli Syndrome
  • PNH

Disorder Subdivisions



    General Discussion
    Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, acquired stem cell disorder. The classic finding is the premature destruction of red blood cells (hemolysis), resulting in repeated episodes of hemoglobin in the urine (hemoglobinuria). Hemoglobin is the red, iron-rich pigment of blood. Individuals with hemoglobinuria may exhibit dark-colored or bloody urine. In addition to hemolysis, individuals with PNH are also susceptible to developing repeated, potentially life-threatening blood clots (thromboses).

    Affected individuals also have some degree of underlying bone marrow dysfunction or insufficiency. Bone marrow, the spongy center of the large bones of the body, produces hematopoietic stem cells, which grow and eventually develop into red blood cells (erythrocytes), white blood cells (leukocytes), and platelets. Severe bone marrow dysfunction potentially results in low levels of red and white blood cells and platelets (pancytopenia). The specific symptoms of PNH vary greatly, and affected individuals usually do not exhibit all of the symptoms potentially associated with the disorder.

    Organizations related to Paroxysmal Nocturnal Hemoglobinuria
    • Aplastic Anemia & MDS International Foundation, Inc.
      P.O. Box 310
      Churchton MD 20733
      Phone #: 410-867-0242
      800 #: 800-747-2820
      e-mail: info@aamds.org
      Home page: http://www.aamds.org
    • Madisons Foundation
      PO Box 241956
      Los Angeles CA 90024
      Phone #: 310-264-0826
      800 #: N/A
      e-mail: getinfo@madisonsfoundation.org
      Home page: http://www.madisonsfoundation.org
    • NIH/Hematology Branch, National Heart, Lung and Blood Institute (NHLBI)
      10 Center Dr, Building 10-CRC
      Bethesda MD 20892-1202
      Phone #: 301-402-0764
      800 #: --
      e-mail: zamaniw@nhlbi.nih.gov
      Home page: http://dir.nhlbi.nih.gov/labs/hb/index.asp?
    • NIH/National Institute of Allergy and Infectious Diseases
      6610 Rockledge Drive
      Bethesda MD 20892-6612
      Phone #: 301-496-5717
      800 #: --
      e-mail: N/A
      Home page: http://www.niaid.nih.gov/
    • PNH Support Group
      http://www.pnhdisease.org
      None None None
      Phone #: N/A
      800 #: N/A
      e-mail: N/A
      Home page: http://www.pnhdisease.org



    For a Complete Report

    This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html