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    Progressive Multifocal Leukoencephalopathy

    Important
    It is possible that the main title of the report Progressive Multifocal Leukoencephalopathy is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

    Synonyms

    • PML

    Disorder Subdivisions

    • None

    General Discussion

    Progressive multifocal leukoencephalopathy (PML) (1) is a neurological disorder characterized by destruction of cells that produce the myelin, an oily substance that helps protect nerve cells in the brain and spinal cord, also known as central nervous system (CNS) white matter. It is caused by a virus called JC virus (JCV), named after the initials of the patient in whom it was first discovered. The virus is widespread, found in up to 85% of the general adult population. It remains inactive in healthy individuals and causes disease only when the immune system has been severely weakened, such as in people with HIV/AIDS, or hematological malignancies, and in organ transplant recipients who receive immunosuppressant medications to avoid rejection of the transplanted organ. Altogether, PML occurs in approximately one in 200,000 people.

    The term "progressive" in PML means that the disease continues to get worse and often leads to serious brain damage. The term "multifocal" means that JCV causes disease in multiple parts of the brain. However, it is possible for an individual with PML to have only one brain lesion instead of several lesions. The term "leukoencephalopathy" means that the disease affects mainly the white matter of the brain or myelin, although there are some rare cases in which the gray matter neurons are also involved.

    Resources

    amfAR, The Foundation for AIDS Research
    120 Wall Street
    13th Floor
    New York, NY 10005-3908
    USA
    Tel: (212)806-1600
    Fax: (212)806-1601
    Tel: (800)392-6327
    Email: webmaster@amfar.org
    Internet: http://www.amfar.org

    Centers for Disease Control and Prevention
    1600 Clifton Road NE
    Atlanta, GA 30333
    Tel: (404)639-3534
    Tel: (800)232-4636
    TDD: (888)232-6348
    Email: cdcinfo@cdc.gov
    Internet: http://www.cdc.gov/

    Gay Men's Health Crisis
    446 West 33rd Street
    New York, NY 10001-2601
    Tel: (212)367-1211
    Fax: (212)367-1236
    Email: webmaster@gmhc.org
    Internet: http://www.gmhc.org/

    NIH/National Institute of Neurological Disorders and Stroke
    P.O. Box 5801
    Bethesda, MD 20824
    Tel: (301)496-5751
    Fax: (301)402-2186
    Tel: (800)352-9424
    TDD: (301)468-5981
    Internet: http://www.ninds.nih.gov/

    HIV/AIDS Treatment Information Service
    P.O. Box 6303
    Rockville, MD 20849-6303
    Tel: (301)519-0459
    Fax: (301)519-6616
    Tel: (800)448-0440
    TDD: (888)480-3739
    Email: atis@hivatis.org
    Internet: http://www.hivatis.org

    AIDSinfo
    P.O. Box 4780
    Rockville, MD 20849-6303
    USA
    Fax: (305)315-2818
    Tel: (800)448-0440
    TDD: (888)480-3739
    Email: ContactUs@aidsinfo.nih.gov
    Internet: http://www.aidsinfo.nih.gov

    Genetic and Rare Diseases (GARD) Information Center
    PO Box 8126
    Gaithersburg, MD 20898-8126
    Tel: (301)251-4925
    Fax: (301)251-4911
    Tel: (888)205-2311
    TDD: (888)205-3223
    Internet: http://rarediseases.info.nih.gov/GARD/

    Madisons Foundation
    PO Box 241956
    Los Angeles, CA 90024
    Tel: (310)264-0826
    Fax: (310)264-4766
    Email: getinfo@madisonsfoundation.org
    Internet: http://www.madisonsfoundation.org

    The Courtney Project, Inc.
    117 North Kirkman Road
    Suite-A
    Orlando, FL 32811
    USA
    Tel: (321)388-1952
    Email: courtneyproject@aol.com
    Internet: http://www.the-courtney-project.org

    For a Complete Report:

    This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

    The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

    It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

    This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

    For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

    Last Updated: 3/19/2013
    Copyright 2006, 2010, 2013 National Organization for Rare Disorders, Inc.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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