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Debilitating Disease
Streator woman fights daily with RSD
By STEPHANIE SZUDA
My Web Times
On the surface, Bea Danko's life shows a beautifully landscaped yard budding with roses, lovely home decor complete with family photos, a loving husband at her side and, lastly, a bright smile.
The budding roses were planted by her grandson, her husband keeps up the home and the smile is forced.
Underneath the surface are years of pain and hardship. Danko, of Streator, was diagnosed with Reflex Sympathetic Dystrophy in 1990.
"You see us use a handicap parking space and then get out and you think we look fine," Danko said.
But the pain exists from head to toe. Danko has had multiple surgeries, including spinal cord stimulator implantations.
The pain experienced with RSD is described as deep, aching, cold, burning and/or increased skin sensitvity, according to the RSD Association. It also causes increased swelling in the affected part, abnormal hair or nail growth, skin color changes, abnormal skin temperatures, abnormal sweating and a limited range of movement, weakness or other motor disorders.
Danko, who's had RSD for 26 years, likes to say, "I have RSD, it doesn't have me." Although she may not be able to plant roses, she can and does use her time to raise awareness and help those with RSD understand and cope with the condition.
She's had phone calls at 2 a.m. from others RSD sufferers who cannot stand the pain any longer. Those with the condition tend to have a high suicide rate, she said. "I've begged to have my limbs taken off," she said. "That's how bad the pain was."
Danko may have been diagnosed in 1990, but she's had RSD since 1980, when she was involved in a car accident that left her paralyzed for a year.
The condition is difficult to diagnose, so doctors weren't sure what was wrong with Danko. After seeing several doctors, a University of Chiacago doctor finally caught it.
"I would rather tell you you have cancer again," the doctor told Danko. Many cancers are curable, but with RSD you're going to live in pain the rest of your life, she said.
"Stick your hand in a pot that's 120 degrees and that's how I feel inside out," Danko said.
Then the next minute she's cold, she said, as she set her hands on her friend sitting nearby. "See? Cold."
Mary Jo Duffee calls Danko "Doc Bea" because she's been through it all, she said. "When I call, I ask to speak to the doc."
Duffee contracted RSD six years ago when she slipped and fell on ice. It was caught early, but the whole right side of her body has been affected.
"You feel like you've got the flu 24/7," Duffee said. When you do have a good day, most of us overdo it."
Learning how to manage those good days and not overdo it can be challenging, she said.
It's also important not to stay in bed all day. People with RSD should keep their bodies and minds active.
Jan Landers attends the RSD support group meetings to learn about the condition her husband Ron has; he was diagnosed with RSD in 1993.
"He talks back to the TV. It used to annoy me, but it's his way of dealing with it and keeping busy," Landers said.
There is hope for the young and those who diagnosed early.
Danko's condition is beyond hope for remission, but for the past four years she has raised funds for the RSD Association. Last year she brought in around $500. She places canisters around several Streator businesses, and has received donations from Ottawa businesses as well. She will be at Kroger's, 2399 N. Bloomington St., Streator, Nov. 4 collecting donations.
Half the money collected is donated to Streator residents, Danko said. The other half goes to
the association.
Danko is also trying to pass a bill in Illinois to help those with RSD have better access to their Social Security, she said. The bill has already been passed in several other states, she said.
Danko said she spends over $2,000 a month on medications.
Source
September 22, 2006 |
