National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Syringomyelia 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.
Syringomyelia is a neurological disorder characterized by the formation of a fluid-filled cyst (syrinx) within the spinal cord. This cyst may, for unknown reasons, expand during adolescence or the young adult years, destroying the center of the spinal cord as it does.
As the syrinx expands, it affects the nerves that stimulate the patient's legs, arms, back and shoulders. In turn, the affected individual may feel considerable pain and weakness, and may lose the ability to distinguish hot from cold objects. The combination of symptoms and signs may vary considerably from person to person, depending on where in the spine the syrinx is located and how much it expands over time. Often, the symptoms develop slowly. Unless the condition is treated surgically, it may lead to neurological deficits and chronic, intense pain.
American Syringomyelia & Chiari Alliance Project
P.O. Box 1586
Longview, TX 75606-1586
Canadian Syringomyelia Network
69 Penny Crescent
Ontario, L3P 5X7
World Arnold Chiari Malformation Association
31 Newtown Woods Road
Newtown Square, PA 19073
Christopher & Dana Reeve Foundation
636 Morris Turnpike, Suite 3A
Short Hills, NJ 07078
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
PO Box 241956
Los Angeles, CA 90024
Christopher S. Burton Syringomyelia Foundation, Inc.
P.O. Box 100335
Fort Lauderdale, FL 33310-0335
320 Osprey Court
Wexford, PA 15090
Chiari & Syringomyelia Foundation
29 Crest Loop
Melville, NY 11747
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 firstname.lastname@example.org
Last Updated: 9/23/2007
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