Wednesday, October 28, 2009

Illinois House Bill 9 (Public Act 96-0605)

RSDS legislation signed into law

Illinois Governor Pat Quinn has signed legislation that seeks to raise public awareness of a painful neurological disorder. House Bill 9 (Public Act 96-0605) targets Reflex Sympathetic Dystrophy Syndrome (RSDS), a chronic syndrome characterized by severe burning pain, changes to bone and skin, tissue swelling and extreme sensitivity to touch that, if untreated, results in permanent deformity and severe pain.

The new law will create an educational program to raise public awareness of RSDS which focuses on the nature and possible causes of the syndrome, the risk factors that may contribute to its development, various treatment options, and the availability of treatment and support services.

Dahl took the legislative lead in advancing the measure at the request of Bea Danko, a Streator resident who lives with RSDS. The Senator met Danko at an RSDS support group meeting in 2008, and agreed to sponsor legislation to promote awareness of the syndrome stressing the importance of early detection, diagnosis and treatment.

“Bea deserves enormous credit in moving this bill forward,” Dahl said. “When similar legislation I sponsored last year got bogged down due to political games, she kept the pressure on lawmakers to do the right thing. It was an honor to work with her in getting this legislation passed and signed into law.”

Please understand that I've spent the morning preparing for my first ever DIY home surgery, involving the elimination of my right leg. I was poised to hop on over to YouTube, where surely I would find a plethora of instructional videos on amputation, when I decided to check my email. I might be in too much pain later to take Broatch, of RSDSA fame. Included therein was this announcement of one more instance of "awareness" legislation, this time in Illinois.

Clang ,clang, clang went the trolley!
Ding, ding, ding went the bell!

Two points, that's all:

1. It's a disservice to continue to use the term RSD/RSDS in lieu of CRPS. At least recognize the dual designation of CRPS/RSD(S). Initially, I also resisted the term, but once i realized that RSD(S) continues the advancement of Wrong Science and ordinary misunderstanding, well... at the very least, using the term CRPS creates the consistency necessary to support applications to Social Security, and lays the foundation for proper comprehension of the disease as it progresses.

[It is insufficient to just say, "Oh, CRPS Type 1 is RSD; Type 2 is causalgia." No, we need to explain the sympathetic nervous system's involvement or noninvolvement, explain about SMP and non-SMP! Yes, it can be gnarly, and tedious. And remedial! I just visited the website of a prominent medical school pain management department, where I found this as the complete explanation of the term CRPS: "Previously known as causalgia or RSD, reflex sympathetic dystrophy. Pain is caused by abnormal activity in the sympathetic nervous system." I am not sure where the effort to inform needs to begin!]

2. This isn't really a "point." It's more a quick Vent. A few years ago, someone spearheaded an attempt to get a similar bill passed in the Illinois legislature. There was a problem... I can't remember who killed the bill, who wouldn't allow it to the floor for debate/vote... Oh, wait!

Someone with the name of Obama, if memory serves...

1 comment:

  1. Miss you. Hope all is well.
    Wanna play Wordles?


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