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 Inc.
300 N. Green Street, Suite 412
PO Box 1586
Longview, TX 75606-1586
Canadian Syringomyelia Network
69 Penny Crescent
Ontario, L3P 5X7
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
World Arnold Chiari Malformation Association
31 Newtown Woods Road
Newtown Square, PA 19073
Christopher Reeve Paralysis 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.
2129 Nova Village Drive
Fort Lauderdale, FL 33317
Internet: http://www.thesmfoundation.org and http://www.SyringomyeliaFoundation.org
C&S Patient Education Foundation
320 Osprey Court
Wexford, PA 15090
Chiari and Syringomyelia Network
4231 N. Winfield Scott Plaza #7
Scottsdale, AZ 85251
Chiari & Syringomyelia Foundation (CSF)
29 Crest Loop
Staten Island, NY 10312
For a Complete Report
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (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