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

For those in CALIFORNIA:

http://boxer.senate.gov/

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

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

Hi Debbie,

I am very concerned about my Blood-brain Barrier. Hugs, Roz

Heya,

I went to college with another person who had RSD and one of my teachers mothers had RSD.

At uni, someone on my course's best friend at home has RSD.

I was out shopping in Cambridge with mum whilst I was in hospital a couple of years ago, went in to M and S to buy something - and the person who served me had been in hospital recovering from RSD the previous year.

When I was at boarding school I had 2 people my own age with full body RSD within a 30 minute drive of me.

I went to church with a specialised RSD OT who had dealt with loads of us.

My old GP practise had another RSD patient which is why I was diagnosed in 2 weeks as they recognised it.

My sister is a trainee nurse and has treated a patient with RSD in the arms and was the only nurse (and medical practioioner) on the ward who knew what it was (and because she's a bossy cow told the patient to stop whingeing and start moving. she is SO lovely - NOT).

BUT. Before I developed it I had never heard of it!! My mum used to be an orthopeadic nurse and worked with fracture clinics etc and yet, she had never seen it before. She is now a captain and sister RN in the army and has never seen it despite tons of trauma cases/ being asked to assist in review of trauma cases.

So why? Firstly I guess there aren't that many of us that stay on to get diagnosis's or who don't recover properly. Secondly, It's all the name game - as Artist said there are so many names for this disease. Thirdly, to be honest quite a few of the people here are house bound etc - and so if people don't really know what's wrong then they can never discover (think what this disease would be like without the internet to find other people for support!). Before it would just be either "some form of pain" or something.. Deb - isn't Manhatten (is that the right place?) one of the most uber uber populated places?

I don't know. It's really bizzare! It should be better known.

As for changing the name from RSD to CRPS. I HATE CRPS, I won't even use the name. And as for drs, well, my GP still believes I have muscular dystrophy instead of RSD, as do most of my non specific RSD drs....because they see the word dystrophy and immediatly go "MD!"

GRRR.....

Love

Frogga xxxxxx

Hi,

Stumbled on this today, a small local study - I've put the most relevant bit in bold:

http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12749974
1: Pain. 2003 May;103(1-2):199-207.

Complex regional pain syndrome type I: incidence and prevalence in Olmsted county, a population-based study.

* Sandroni P,
* Benrud-Larson LM,
* McClelland RL,
* Low PA.

Mayo Clinic, Rochester, MN 55905, USA. psandroni@mayo.edu

The objective of this study is to undertake a population based study on the incidence, prevalence, natural history, and response to treatment of complex regional pain syndrome (CRPS). All Mayo Clinic and Olmsted Medical Group medical records with codes for reflex sympathetic dystrophy (RSD), CRPS, and compatible diagnoses in the period 1989-1999 were reviewed as part of the Rochester Epidemiology Project. We used IASP criteria for CRPS. The study population was in the Olmsted County, Minnesota (1990 population, 106,470). The main outcome measures were CRPS I incidence, prevalence, and outcome. Seventy-four cases of CRPS I were identified, resulting in an incidence rate of 5.46 per 100,000 person years at risk, and a period prevalence of 20.57 per 100,000. Female:male ratio was 4:1, with a median age of 46 years at onset. Upper limb was affected twice as commonly as lower limb. All cases reported an antecedent event and fracture was the most common trigger (46%). Excellent concordance was found between symptoms and signs and vasomotor symptoms were the most commonly present. Three phase bone scan and autonomic testing diagnosed the condition in >80% of cases. Seventy-four percent of patients underwent resolution, often spontaneously. CRPS I is of low prevalence, more commonly affects women than men, the upper more than the lower extremity, and three out of four cases undergo resolution. These results suggest that invasive treatment of CRPS may not be warranted in the majority of cases.

PMID: 12749974 [PubMed - indexed for MEDLINE]

all the best

Hi Artist..Thanks for the info. I just finished reading an article in the RSDSA Review that painted a much bleaker picture. A Dr. Veldman from the Netherlands studied 829 patients at his clinic in the Netherlands and reported that 80% did not resume their former activitys.The John Hopkins on-line survey also revealed that 83% reported difficulty with mobility,54% with self care and 95% with usual activity. Isn't it amazing how much one study differs from another. I quess it shows that we can't put much faith in numbers. Personally, when I read a study that suggests that 74% of patients get better, it makes me feel that somehow I failed. But then I go on-line and check out all the rsd forums and see that I'm not alone. Hope you are having a good day....Jeannie