Home >> Press Releases >> July 28, 2005                                      Download as .pdf 

ASAP HOSTS NATIONAL CONFERENCE ON RARE NEUROLOGICAL DISORDERS
Condition Impacts Local Resident Who Attended Conference

A local resident,                , recently returned from Cedar Rapids, Iowa after participating in a national conference for a rare spinal cord disorder, syringomyelia, and a closely related condition, Chiari malformation. The conference, held July 20-23 at the Cedar Rapids Marriott, was organized by the American Syringomyelia Alliance Project, Inc. (ASAP).

Syringomyelia (sear-IN-go-my-EEL-ya), often referred to as SM, is a chronic disorder involving the spinal cord. Cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx. Some common symptoms include: 


headaches
muscle weakness & spasticity 
motor impairment
scoliosis
loss of sensitivity, especially to hot & cold
loss of bladder and/or bowel control
chronic pain


Chiari (Kee-AR-ee) malformation, often referred to as CM, is characterized by a small or misshapen posterior fossa (the compartment in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal. Some common symptoms include: 


head & neck pain 
headaches, often accentuated by coughing, sneezing or straining
balance problems 
vision problems
difficulty swallowing
sleep apnea 

SM and CM are diagnosed and monitored by MRI. One or more neurosurgeries may be required either to stabilize the condition or modestly improve its symptoms. Once considered relatively rare disorders, syringomyelia and Chiari malformations are emerging as more prevalent problems due to improved diagnostics and recent research findings that suggest possible links to conditions heretofore perceived as unrelated.

Each year the American Syringomyelia Alliance Project, Inc. holds a conference to bring together patients, caregivers, and leading experts in the fields of neurosurgery, neurology, genetics, pain management, physical therapy, spinal cord research and other disciplines who specialize in SM, CM and related disorders. A primary aim of the conference is to impart to patients, physicians and caregivers the most recent and up-to-date information and techniques in treating and living with the disorder. 

Established in 1988, American Syringomyelia Alliance Project, Inc. is a national 501(c)(3) nonprofit voluntary health organization dedicated to serving those who are affected by syringomyelia, Chiari malformation and related disorders and to finding a cure. With approximately 4,200 members in the U.S. and abroad, American Syringomyelia Alliance Project, Inc. is recognized as the leading source of reliable information about SM and CM. 

For more information about syringomyelia and Chiari, visit the ASAP web site at www.ASAP.org or call 1-800-ASAP-282.