Amanda Riser of St. Clairsville grew up thinking she was just clumsy. But when her arms went numb and the headaches wouldn't quit, she knew something more serious was going on.
Mary Young of Bridgeport, a physician's assistant and mom of two, was accused of making up her headaches, being lazy and just wanting attention. Three brain surgeries later, the pressure in her head is still debilitating at times, she can't bend over or lift anything heavy, and she takes a sedative at night to quiet the ringing in her ears.
Eleven-year-old Grace Taylor of Wheeling has suffered mysterious pain in her feet, legs and head since she was a toddler, among other symptoms. She was put through every test imaginable - including psychiatric evaluations - before a local doctor finally ordered an MRI that solved the mystery.
From left, Amanda Riser of St. Clairsville, Grace Taylor of Wheeling and Mary Young of Bridgeport will participate in this weekend's fundraiser for the American Syringomyelia and Chiari Alliance Project.
These three people will be among those at Wheeling Heritage Port Saturday, Oct. 15, walking to raise awareness and money for a research and support organization that bears the names of their disorders, the American Syringomyelia and Chiari Alliance Project.
The Together We Can Walk & Roll for a Cure 5K event begins with a free concert Friday night, Oct. 14, featuring Mark Gorby followed by the Fabulous Bender Boys. Registration for the walk begins at 8 a.m. Saturday, and the walk starts at 9.
"I want people to see this is a real thing and it affects real people's lives," said Riser, a 30-year-old social worker and mother of 6-year-old Kamryn. "I would like to see people, and even medical professionals, take it seriously. I've been to the emergency room several times with the pain and told them I have Chiari, and I've had to spell it."
Together We Can Walk & Roll, to benefit the American Syringomyelia and Chiari Alliance Project, will take place Friday and Saturday, Oct. 14-15 at Wheeling Heritage Port amphitheater and trail. The music of Mark Gorby, followed by the Fabulous Bender Boys, will entertain audiences Friday night. Registration for the 5K walk begins at 8 a.m. and the walk starts at 9 a.m. Saturday.
Chiari (kee-AHR-ee) I malformation, named after its discoverer Dr. Hans Chiari, is a congenital anomaly in which the lower portion of the cerebellum (the part of the brain in the lower back part of the head) protrudes through the opening in the base of the skull that leads to the spinal canal. This causes pressure on the brain stem and obstructs the normal flow of spinal fluid, causing sometimes severe headaches, vision problems, and muscle weakness and numbness.
Along with Riser, Young is a Chiari malformation patient. She also has related disorders called tethered spinal cord, in which the spinal cord fails to elongate normally, and Ehlers-Danlos, which affects her joints. Facial numbness and headaches prompted her to have an MRI that led to her diagnosis in 2007. She underwent her first decompression surgery Feb. 2, 2010, and her second surgery to drain trapped spinal fluid one month later, both at Cleveland Clinic. A third procedure earlier this year at Duke University patched a hole in her dura (brain covering) that occurred during a previous surgery.
Grace has syringomyelia, a chronic disorder in which a syrinx - a cavity or bubble - forms inside the spinal cord. This bubble causes pressure in the spinal cord and disruption of spinal fluid, and can result in severe pain, loss of sensation, loss of bladder and bowel control, and even paralysis. Chiari is the most common cause of syringomyelia, but the cause of Grace's disorder is unknown, said her mother, Jennifer.
There is no cure for either Chiari or syringomyelia, but the American Syringomyelia and Chiari Alliance Project, or ASAP, was formed to help fund research as well as to support people with the disorders. Both adults and children are affected, and ASAP reports about 250,000 Americans have syringomyelia. They don't know the number with Chiari but estimate it is double that.
"A child should not know this pain and suffering, and that is why I am adamant about awareness and funding research to find a cure," said Young, who along with her husband, Joe, have helped organize this weekend's fundraiser.
Young and Riser said the support of the online community on the ASAP website has been invaluable, and Jennifer Taylor agreed.
"Without ASAP, I would have been lost in the dark," said Jennifer Taylor. "They're the only place I could find information."
For more information about Chiari or syringomyelia, visit www.ASAP.org.
For information about Together We Can Walk & Roll, call the Youngs, 304-559-6555 or email them at firstname.lastname@example.org.