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. 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
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