Progressive Multifocal Leukoencephalopathy

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Progressive Multifocal Leukoencephalopathy is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Progressive multifocal leukoencephalopathy (PML) is a neurological disorder characterized by destruction of 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 at least 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 immuno- suppressant 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 is also involved.

Resources

amfAR (American Foundation for AIDS Research)
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Centers for Disease Control and Prevention
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Gay Men's Health Crisis
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National Institute of Neurological Disorders and Stroke (NINDS)
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Tel: (800)352-9424
TDD: (301)468-5981
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HIV/AIDS Treatment Information Service
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TDD: (888)480-3739
Email: atis@hivatis.org
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AIDS Clinical Trials Information Service
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TDD: (800)243-7012
Email: actis@cdcnac.org
Internet: http://www.actis.org

Genetic and Rare Diseases (GARD) Information Center
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Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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

For a Complete Report

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

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