Sen. Gary Dahl, R-Granville, listens as Bea Danko of Streator testifies about the importance of raising public awareness of RSDS Tuesday. Danko visited Springfield to testify before the Senate Public Health Committee on her support for the measure.

SPRINGFIELD — Beatrice Danko thought she had cancer when she met with a doctor nearly 29 years ago to assess recurring pains in her abdomen.

She already had one tumor removed from her stomach years earlier.

"Bea, I am very sorry, I wish I could tell you that you had cancer again, because either it was going to be cured like last time, or you are going to pass away'," Danko recalled her doctor saying. "But the trouble is, the disease I'm going to give you right now, is called RSD."

Danko was diagnosed with reflex sympathetic dystrophy, a nervous-system disease that's onset has been linked to nerve damage, trauma, surgery or infections.

Symptoms can range from inflammation of joints to a burning sensation that envelops a limb.

Danko now runs a support group in Streator for those afflicted with the disease and said it can drive its victims to commit suicide. For some, death is better than suffering with the often debilitating disease.

"We had a child who's 13, she does not want to live, and she prays to God because she doesn't want to live," Danko said. "She doesn't want to live with this life."

The pain — which Banko described as constricting her body in a vice or knives piercing her — makes everyday tasks such as changing clothes or hugging a loved one difficult, if not impossible.

"We have to live. Clothes are hard for us to put on. We have to put air conditioning in our homes because fans hurt. Touching sets off alarms in the body," she said.

State Sen. Gary Dahl is pushing for an educational program to be run by the Illinois Department of Public Health that would educate doctors and other professionals in the identifying symptoms of RSD.

Dahl's proposal would require the state health department to develop and operate professional education programs for professionals who encounter the disease: lawyers specializing in worker's compensation claims, judges, nurses and physicians.

Danko said there were times where doctors simply would not believe what she was saying, not having heard of the disease before.

Though the fate of new programs appear in limbo because of the state's dire fiscal situation, Dahl's bill has a stipulation in it that would allow for private donations to help fund the program.

Dahl already donates his salary to charities and said he would consider using some of his own personal funds to offset costs to the state.

Dahl said it would cost the state money in labor and administrative costs, but argued his program would save the state money it already spends on the bureaucracy often involved with these cases.

"The savings would come simply by not taking two years, three years, four years resolving a worker's comp case," Dahl said. "If we could eliminate that, these specialists come at a high price. We'd spend a whole lot less, across the state."

State Sen. Mike Jacobs, D-East Moline, said this is the type of program that can likely be justified, considering the nature of the disease and the lack of public awareness about it.

"I believe even people who understand budgets and bottom lines sometimes can show compassion, and that people have needs higher than money. The fact is, government is not a business," Jacobs said.

Source

March 6, 2009