You've probably never even heard of it before - few have.
But Sharon Coldiron, of Wichita is trying to do something about that.
Coldiron is working to raise awareness about Chiari Malformations. This syndrome is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the normal flow of cerebrospinal fluid.
The disease is hard to pinpoint because it has many symptoms shared with other ailments and it affects every patient differently.
Some victims have minor symptoms and never even seek treatment. Others, like Coldiron have their lives changed forever.
"It has taken over my life," Coldiron said. "I haven't been able to work for five years. I feel like I went to college for no reason."
She had a received certificate in medical assistance from Vatterott College and was only 20 weeks from a degree when her condition stopped her progress.
Coldiron suffers from intense pain, memory loss, vertigo, visual problems and numbness in her limbs.
Her symptoms are severe. Her treatment has been, as well.
Coldiron has to take high doses of Dilaudid to make it through each day. She has also had neurosurgery in a failed attempt to correct her condition. She bore the staples up the back of her neck and head as she waited hopefully for the symptoms to subside.
But the procedure did not offer Coldiron the miracle she had been hoping for. Only 80 percent of the surgeries like she endured will be successful.
Coldiron is looking for a Plan B.
But in the meantime, she is trying to help others who may be suffering the affects of the disease and not even know it.
"I grew up in Wichita and it took until I was 28 to get diagnosed," Coldiron said. "That's why we are trying to raise awareness and get the word out."
She said that the USA Today has recently featured the condition and ABC's Extreme Makeover Home Edition helped a family that has two Chiari victims.
Now Coldiron is bringing the word to Kansas. She is working with officials in Gov. Kathleen Sebelius' office proclaim Chiari Awareness Day across the state.
She is also organizing a walk to raise funds, as well as, awareness.
The Cure Chiari Walk will be held at 10 a.m., March 22 in the Sedgwick County Park in Wichita. Anyone who is interested can get more information about the disease and the walk by going to http://pctips.nationvoice.com/page.php?2 or emailing Coldiron at shaycoldiron_curechiari@yahoo.com.
