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Progressive Multifocal Leukoencephalopathy
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Copyright 2006
NORD is grateful to Igor J. Koralnik, MD, Director, HIV/Neurology Center, Beth Israel Deaconess Medical Center, Associate Professor of Neurology, Harvard Medical School, and Francisco Bernal-Cano, Fellow, HIV/Neurology Center, Beth Israel Deaconness Medical Center, for the preparation of this report.
Synonyms of Progressive Multifocal Leukoencephalopathy
Disorder Subdivisions
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.
Organizations related to Progressive Multifocal Leukoencephalopathy
- AIDS Clinical Trials Information Service
1600 Research Boulevard
P.O. Box 6421 Rockville MD 20849-6421
Phone #: 301-251-5160
800 #: 800-448-0440
e-mail: actis@cdcnac.org
Home page: http://www.actis.org
- Centers for Disease Control and Prevention
1600 Clifton Road NE
Atlanta GA 30333
Phone #: 404-639-3534
800 #: 800-311-3435
e-mail: http://www.cdc.gov/netinfo.htm
Home page: http://www.cdc.gov/
- Gay Men's Health Crisis
119 West 24th Street
9th Floor New York NY 10011
Phone #: 212-367-1211
800 #: --
e-mail: webmaster@gmhc.org
Home page: http://www.gmhc.org/
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- HIV/AIDS Treatment Information Service
P.O. Box 6303
Rockville MD 20849-6303
Phone #: 301-519-0459
800 #: 800-448-0440
e-mail: atis@hivatis.org
Home page: http://www.hivatis.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
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- amfAR (American Foundation for AIDS Research)
120 Wall Street
Thirteenth Floor New York NY 10005-3902
Phone #: 212-806-1600
800 #: 800-392-6327
e-mail: webmaster@amfar.org
Home page: http://www.amfar.org
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