CRPS... We've arrived!

"This one was made by Holly Schank for hers and our friend Michelle De Leonard."

There's been a pleasant dearth of fresh CRPS/RSD research to report lately, and so it seems the right moment to announce that, as a disease entity, CRPS is now on the map.

Things that mark this arriviste take on things? A ribbon. A plastic bracelet. A few correspondingly sick celebrities. An annual black tie Silent Auction... and at least one Walkathon.

Check, check, check, check, and... check!

But most of all? Most of all, there has to be a quilt. 

I have an Attitude about Awareness and the various ways of Raising Awareness.  I experience roughly the same sensations that I associate with a plummeting blood sugar -- it's très hypoglycemic.  It's kind of a reaction against the prevalent Political Correctness. 

Let's just say that my favorite cause button depicts a crisp red AIDS awareness ribbon against a white background, with "Fuck the red ribbon / Find a cure" in bolded italics.

Okay, so in addition to a constitutional dislike of What's Expected, my wariness about all the Awareness flying around might -- might -- have something to do with laziness, and I ought to be ashamed.

The most excellent Doctor Roberta, who Suture[s] For A Living, is the obvious medical blogger to make the announcement, as her handiwork outside surgery is as beautiful as it is within. She is one of few doctor bloggers to address Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy: Here and here.

In her blog recently, she passed on details about the CRPS/RSD Awareness Quilt Project from its organization page over on Facebook:

Contribute a 12" x 12" patch to be added to the RSD/CRPS Awareness quilt. Make sure you keep what you want to show 1" away from the borders... This is for pain awareness. Help spread the word and make a square...if you need help participating please let us know....Mail all quilt panels to: RSD/CRPS Awareness Quilt P.O. Box 500915 Malabar, Fl. 32950-500915. Check out our links for information that can help you put your square together...everything from sewing tips to iron-on tranfers using your printer. If you have any questions please feel free to drop Troy Walker a message and I'll help you out if I can. Thank you very much for helping to spread awareness of Chronic Pain.

At last count, there were 137 panels documented by pictures on the Facebook page.

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...