Bea Danko has spent 28 years battling a neurological syndrome that has left her body wracked with chronic pain. Now she's fighting to raise public awareness to help others who might be suffering.
Danko, of Streator, wants to put pressure on state officials to spread the word about Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.
The Reflex Sympathetic Dystrophy Syndrome Association describes the syndrome as one in which the body's nervous system "misfires, sending constant pain signals to the brain."
For Danko, it means enduring extreme and what often feels like burning pain throughout her body. The pain is so severe and persistent Danko says she can sleep for only a few hours at night.
Triggered by physical trauma -- in Danko's case a car accident -- other symptoms can include tissue swelling, extreme sensitivity to touch, limited range of movement and abnormal skin color changes and temperature, according to the RSD association.
Danko is involved with a local RSD support group in La Salle County but she wants to see more done statewide.
Danko persuaded state Sen. Gary Dahl, R-Granville, to sponsor a bill last fall that would require the Illinois Department of Public Health to create an education program to promote awareness of the syndrome and the importance of early diagnosis and medical treatment.
The bill appears stalled, but Dahl said he isn't giving up.
"We're going to keep working on this until we can get it out of (the rules committee)," he said. "It's going to be tough to get it moving this year, but we're not going to give up on it."
Dahl's bill would require some state funding -- he couldn't estimate how much -- which could make it a tough sell in a tight budget year. But the state routinely finds money for issues and this is a worthy cause, he said.
Five other states have succeeded in putting RSD awareness programs in place through their state health departments, said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association.
Dahl's bill is SB 1861 and can be found at www.ilga.gov. Additional information about RSD can be found at the Reflex Sympathetic Dystrophy Syndrome Association's website at www.rsds.org.