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Teen uses concert to raise awareness of syringomyelia
01-15-2012, 11:30 AM
Post: #1
Teen uses concert to raise awareness of syringomyelia
On many days, Stefani Kurutz can use an extra pair of legs. That's where her mom comes in.

"I'm her legs," said her mother, Kym, who is right by her daughter's side as the teen grapples with the often crippling effects of a little-known disease that has totally restructured her life.

Two years ago at 16, Stefani Kurutz was diagnosed with syringomyelia, a spinal cord disorder that often steals her energy and has caused a host of other medical conditions including chronic pain.

"It was difficult for me to deal with. I didn't want to believe I had this," said Kurutz, who learned the effects of the disease the hard way.

"At first, I blew it off. I kept going at my regular pace, and my body couldn't handle that pace anymore," said Kurutz, who was forced to complete her senior year at Nicolet High School from home because of medical complications. "It's taken me a long time to figure out what I can handle from day to day."

But with what energy she has, the 18-year-old is spearheading a benefit concert to bring greater awareness and raise money for research to one day combat the spinal cord disease.

The Music with a Backbone benefit concert will take place at 7 p.m. Saturday at the Turner Hall Ballroom, 1032 N. 4th St., and will feature three local bands.

All proceeds will go to the American Syringomyelia & Chiari Alliance Project, an organization whose aim is to find a cure for the condition that occurs when cerebrospinal fluid, normally found outside of the spinal cord and brain, enters the spinal cord, forming a fluid-filled cyst that wreaks havoc on the central nervous system.

One of the greatest hurdles in combating the disease, which has similar symptoms to multiple sclerosis and fibromyalgia, is that it is often misdiagnosed, said Michael Scarpone, the alliance's chief executive officer.

It can be detected, he said, only through an MRI that gives a visual picture of the cyst, which often expands and elongates over time, destroying the center of the spinal cord. Symptoms develop slowly but can come on suddenly after a fall in cases such as a spinal cord injury.

As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur from severe headaches to paralysis, he said.

"There is a high incidence of this disorder among children," said Scarpone, who estimates that nearly 300,000 people in the United States are living with the disease.

That number, though, could be much higher, given the misdiagnosis factor. For example, Kurutz was first diagnosed with myriad conditions, from hand, foot and mouth disease to mental illness, before the cyst was detected through an MRI.

Some patients with the disorder can have the cyst removed, but the location of Kurutz's doesn't make her a viable candidate. There is as yet no standardized treatment for the disease, said Scarpone, who added that the alliance is sponsoring a study at the University of Wisconsin Hospital and Clinics on the various outcomes of surgical procedures. The study is being led by Bermans J. Iskandar, a faculty member and physician at the hospital.

Kurutz takes 28 pills a day to control the disease's effects, which include fluctuations in blood pressure and heart rate, and digestive and respiratory problems.

"If I get in too deep of a sleep, I could stop breathing," said Kurutz, who is able to lead close to a normal life as a teen, including going to the mall with friends, albeit for shorter periods.

Saturday's benefit concert will feature the Jeanna Salzer Band from 7 to 8 p.m., The Color Truth from 8:15 to 9:15 p.m. and the Micah Olsan Band, from 9:30 to 11 p.m.

Tickets are $12 in advance through Turner Hall Ballroom and $17 at the door.
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