X linked Lymphoproliferative Syndrome
National Organization for Rare Disorders, Inc.
It is possible that the main title of the report X linked Lymphoproliferative Syndrome 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.
- Duncan Disease
- EBV Susceptibility (EBVS)
- Epstein-Barr Virus-Induced Lymphoproliferative Disease in Males
- Immunodeficiency-5 (IMD5)
- X-Linked Progressive Combined Variable Immunodeficiency
- Purtilo Syndrome
X-linked lymphoproliferative (XLP) syndrome is an extremely rare inherited (primary) immunodeficiency disorder characterized by a defective immune system that is powerfully responsive to infection with the Epstein-Barr virus (EBV). This virus is common among the general population and is relatively well-known because it is the cause of infectious mononucleosis (IM), usually with no long-lasting effects. However, in individuals with XLP, exposure to EBV may result in severe, life-threatening fulminant hepatitis; abnormally low levels of antibodies in the blood and body secretions (hypogammaglobulinemia), resulting in increased susceptibility to various infections; malignancies of certain types of lymphoid tissue (B-cell lymphomas); and/or other abnormalities. The range of symptoms and findings associated with XLP may vary considerably from case to case. In addition, the range of effects may change in an affected individual over time. In most cases, individuals with XLP experience an onset of symptoms anytime from ages about 6 months to 10 years of age.
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Immune Deficiency Foundation
40 W. Chesapeake Avenue
Towson, MD 21204
NIH/National Institute of Allergy and Infectious Diseases
Office of Communications and Government Relations
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612
National Cancer Institute
6116 Executive Blvd
Bethesda, MD 20892-8322
Center for International Blood and Marrow Transplant Research
Froedtert and the Medical College of Wisconsin Clinical Cancer Center
9200 W. Wisconsin Avenue
Milwaukee, WI 53226
National Bone Marrow Transplant Link
20411 W. 12 Mile Rd
Southfield, MI 48076
OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
Philadelphia, PA 19104-4283
International Patient Organization for Primary Immunodeficiencies
Cornwall, PL11 3LE
Tel: 44 1503 250 668
Fax: 44 1503 250 668
Jeffrey Modell Foundation
780 Third Avenue
New York, NY 10017
NIH/National Heart, Lung and Blood Institute ~ Hematology Branch
10 Center Dr, Building 10-CRC
Bethesda, MD 20892-1202
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
XLP Research Trust
60 Winchester Road
Hampshire, SO51 8JA
Tel: +44 (0) 1794 521077
European Society for Immunodeficiencies
1-3 rue de Chantepoulet
Geneva, CH 1211
Tel: +31 73-6992965
Fax: +41 22 906 91 40
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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 email@example.com
Last Updated: 9/23/2007
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