Important
It is possible that the main title of the report Pseudoxanthoma Elasticum (PXE)is not the name you expected.
Synonyms
- Elastosis Dystrophica Syndrome (obsolete)
- Gronblad-Strandberg Syndrome
- Systemic Elastorrhexis (obsolete)
Disorder Subdivisions
- PXE, Recessive Type
- PXE, Dominant Type
General Discussion
Pseudoxanthoma elasticum, PXE, is an inherited disorder that affects selected connective tissue in some parts of the body. Elastic tissue in the body becomes mineralized; that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system, and gastrointestinal system. Clinicians first recognized PXE more than 100 years ago. Researchers have made a number of significant advances in the past few years.
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Resources
National Association for Pseudoxanthoma Elasticum (NAPE)
8764 Manchester Road
Suite 200
St Louis, MO 63144-2724
USA
Tel: 3149620100
Fax: 3149620100
Email: napestlouis@sbcglobal.net
Internet: http://www.napxe.org
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov/Health_Info
NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda, MD 20892-2510
United States
Tel: 3014965248
Fax: 3014021065
Email: 2020@nei.nih.gov
Internet: http://www.nei.nih.gov/
NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
PXE International, Inc.
4301 Connecticut Ave NW
Suite 404
Washington, DC 20008-2304
USA
Tel: 2023629599
Fax: 2029668553
Email: pxe@pxe.org
Internet: http://www.pxe.org
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
Macular Degeneration Support, Inc.
3600 Blue Ridge
Grandview, MO 64030
USA
Tel: 8167617080
Fax: 8167617080
Email: director@mdsupport.org
Internet: http://www.mdsupport.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. (r) (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
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: 5/16/2008
Copyright 1986, 1988, 1990, 1991, 1997, 1998, 1999, 2000National Organization for Rare Disorders, Inc.
