RSD: An invisible disease
Group joins with Dahl in fight for awareness
Imagine not being able to sleep every night. Imagine that when you finally do get to sleep, you wake up in constant pain from your head to your toes. Imagine waking up every morning with a foggy brain that coffee can’t fix. This is an unfortunately normal day for more than seven million Americans.
The problem is few people have heard much about this condition or its symptoms. The key to a cure is public awareness. And that’s what one woman and the Reflex Sympathetic Dystrophy and Fibromyalgia-Chronic Pain support group want to see happen.
Since approximately 2006, Streator resident and support group leader Bea Danko has been working to get the Reflex Sympathetic Dystrophy Education Bill passed in Illinois.
“After months and months of speaking and writing letters to our senators for support, Sen. Gary Dahl is the only one who has stepped up to help us by sponsoring Senate Bill 1861,” Danko said.
The bill has already been rejected once in Springfield, but an extension has been granted, allowing Danko, her support group and Dahl, R-Granville, more time to get more support. The group has been successfully creating RSD awareness to the point that in one month “we collected over 600 signatures on a petition to get this bill passed,” Danko said.
Dahl’s office has received more than 2,000 letters in support of the bill and his office is contacting other senators to garner their support when it comes up for a vote again.
Dahl visited the support group in June to learn more about this unknown disease.
“As a result of that meeting, Sen. Dahl would like to visit additional support group meetings throughout the state,” Jennifer Riva, Dahl’s legislative aide, wrote to Danko.
RSD is a chronic neurological syndrome with symptoms that include severe burning pain, medical changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. Though anyone can get RSD, more women than men suffer from it, four or five women to one man.
According to the Reflex Sympathetic Dystrophy Syndrome Association, http://www.RSDS.org, the pain often is described as a deep, aching, cold and burning sensation, along with increasing skin sensitivity.
“I may look healthy, but I am often suffering from unbearable, unrelenting nerve pain,” said one support group member, who asked to remain anonymous. “This pain I live with makes me very depressed, especially because there is no cure right now.”
A very negative effect of the disease is that it is many times invisible.
“No one believes there is anything wrong because you look healthy on the outside,” the member said. “I have good days and bad days. I never know how any day may be like. Most of the time, it hurts to be touched anywhere. If I’m in a store and someone accidentally bumps into me, I’m in severe pain.”
While no one in the medical profession can really say what causes RSD, it can begin with an injury to nerves, bones or joints and muscles, ligaments or tendons. A wrist fracture, heart attack or stroke could trigger RSD.
RSD is a nerve disorder. The public awareness efforts of Danko and her support group are gaining support from not just Dahl, but doctors and associations around the state.
On June 18, Dr. James M. Kelly from Kankakee wrote a letter of support to Danko.
“In 21 years as a pain management specialist, a significant percentage of my patient population battles the effect of this syndrome and many suffer silently without the crucial support that could be generated through greater awareness of RSDS,” he wrote.
“I urgently request Illinois state senators combine their efforts with yours to create public awareness and municipal support for those that suffer (from) RSDS.”
In 2007, Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, wrote a letter with information about public awareness for the disease and thanking Danko for her “iniative to pass a Complex Regional Pain Syndrome Awareness-Education Bill. Every day RSDSA receives heartbreaking, desperate phone calls and letters from individuals with CRPS who are floundering financially. They may lack adequate health insurance, cannot afford medication or treatment and may be in eminent danger of losing their job, car, house or even their marriage.
“Some states have taken pre-emptive action,” he continued in his letter. “The state Legislatures of New York, Pennsylvania, Delaware and Michigan have passed awareness and education bills. These bills have contained a call to action, such as producing brochures to educate consumers or creating materials for health care professionals to help promote greater awareness. The Michigan bill established a work group of medical professionals and the public to create an awareness campaign and mandated educational workshops.”
Danko said she and the support group will never give up hope because so many people suffer from the disease.
“Every day I get phone calls from people with RSD or fibromyalgia,” she said. “We are all usually told that it’s in our heads or we should just suck up the pain and get over it. I’m in constant pain. There are nights when I cry quietly so that I don’t wake up my husband.”
Danko often wonders about the long-term effects of RSD medications.
“I get a lot of questions from people about medication effects. Well, they create bone damage to the point that they look like honeycombs. They can also damage the heart. But often morphine pumps can revive your body for a while. We just have to look for ways to find other alternatives because this disease is so devastating.
“I once got a call from a 68 year-old woman who just developed RSD,” she continued. ” ‘Bea,’ she told me, ‘I can’t go on. I have grandchildren that I can’t be with because of this unbearable pain.’ She ended up committing suicide.”
But Danko remains upbeat and positive, despite her illness.
“There are ways to make the lives a little easier for those that suffer from RSD. I get calls all the time about what you can tell people who want to shake your hand or hug you. I tell them to write up a card and hand it to the person saying you have RSD and cannot be touched today. This way, you won’t be perceived as being rude and they’ll get a better understanding of our disease.”
Support groups also help. One member of the Streator group spoke about her first time visiting.
“I came here because I had a problem that none of my doctors could help me with. Today I know what the problems with RSD are. I learn a lot from everyone who is going through the same thing I am. I can get advice about what to do for certain symptoms. And the best part? I can help someone else.”
The group usually meets the fourth Friday of each month at 3 p.m. in the lower level conference room of St. Mary’s Hospital in Streator. For more information about the group or to offer help in getting Senate Bill 1810 passed, call Danko at 815-672-1182.
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