i had never heard of RSD before being diagnosed. no one i know has had it and no one i know has ever heard of it. after my surgeon told me i had RSD she sent me to the pain doc for treatment. i went to my GP 2 days ago and he told me his mother has it. weird.

Hi Debbie,
My thoughts on this are a bit different, but it is NO surprise to me that is was first discovered during war time. Hugs, Roz

As a reply to Artist's post, I've kind of always wanted to tell everyone I meet a different name for this disease. So one friend would think I had RSD, one CRPS, one Sudek's atrophy...it would be a way of amusing myself.

I've read all of the statistics, all of the stuff about RSD not being rare like everyone else. Ever heard the old joke that 87% of statistics are completely made up? Yeah, I just put down 87 because those were the first two keys I touched.

I think that the real problem is that we don't know the real incidence of RSD. I've met enough people with it to skew my perception if I let it! Personally, I tend to think that RSD isn't technically rare. I consider it in the realm of uncommon and unknown.

Plus, the people who find this board are possibly the uncommon ones as well. It's easy to forget that there are many people out there who developed the early stages of RSD, were treated quickly, and never had a problem again. I know (as in, have met in person several times) at least two people who fall into that category. One was a girl who went to school with me, one was the mother of a close family friend. Neither of them has spared a second thought about RSD since. It just didn't last long enough to have a huge impression on their lives.

One thing I'd like to know is, if they find a genetic predisposition for RSD, are there certain groups that are more likely to be effected than others? If so, it might account for some regional variability in numbers of people who develop RSD. But I have no idea if that's true or not, and it can't really be seen with any of the data we have right now!

-Betsy

What is the public response to Paula Abdul? She's accused of being drunk or on drugs. Did anyone see the SNL skit about her right after the People magazine article came out? They said she had the "crazies"! I used to be a big fan of SNL. Haven't watched it since.
Maybe that is one reason more people don't know about RSD. Some people do think we are crazy.
But, I have other theories on why there is not more awareness. Maybe the same as Buckwheat's.
I'm again on my individual campaign to increase awareness & if someone think's I'm crazy, I'm not going to let that become my problem.\
Has anyone here been involved with a RSD awareness bill?
Linmarie

Betsy,
As far as statistics, I took 4 stat classes in college & the one thing I learned is that you can just about prove anything with them.
Linmarie

How to get an awareness bill in your legislature
by Idamarie Scimeca Duffy

Make an appointment with your local state Senator. Give him or her a copy of the Delaware Bill and impress upon him that their state should follow the lead of Delaware so that the medical community becomes more aware of this insidious disease.

Once the Senator understands how important Awareness is, ask him or her to intercede with the chairman of the State Health & Human Services Committee. He/she will probably insist on your appearing before the committee (as I did) so be prepared to discuss "the Bill" and the positive effect it can have on so many of the state's citizens (voters)! If the Committee passes a Resolution it goes to the full Senate for a vote. If it passes the Senate, you must then get your Local State House of Representatives Member involved. This is easy since you already have an approved Senate version; but the same steps must be taken in the House as in the Senate, as explained earlier.

Once the House approves the Bill, then the Senator gets the Bill on the Governor's Signing Agenda. Even though our Senator (Amick) is a Republican, he had no problem with Governor (Minner), a Democrat, since our House and Senate Bills passed unanimously with no negative votes at all. Health & Human Services (HHS) then spreads the word to all State Licensed Medical Practitioners. (Thus, no additional funds are required because the cost of this comes out of the HHS budget.)

http://www.rsds.org/4/awareness/Advocacy/index.html

Hi Linmarie,

I am in agreement. You could go to 10 top researches with 15 different opinions. But I think they help some. Hugs, Roz :hug:

For those in CALIFORNIA:

http://boxer.senate.gov/

http://en.wikipedia.org/wiki/Barbara_Boxer

Rsd
 

Paula Abdule's doctor retracted the statement that she has RSD- She has some kind of arthritis. I counted and I have met in person at least 20 people im my area (within 20 minutes of my house) who have RSD. Some I met in the doctors office (PM doc) and others at our support group and 1 at physical therapy. I think until someone famous comes out we are out of luck- we need our Micheal J Fox