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PARC’S MISSION (Mandate)

TO SUPPORT, EDUCATE AND INFORM PERSONS LIVING WITH CRPS/RSD, THEIR FAMILIES, FRIENDS, THE COMMUNITY, AND THE MEDICAL PROFESSIONALS TREATING CRPS/RSD ABOUT THE UTMOST IMPORTANCE OF EARLY DIAGNOSIS AND TREATMENT.

PARC’S MISSION

THE SUFFERING OF THESE PERSONS MUST ALSO BE RECOGNIZED

WHAT WE DO

Educate, support, encourage CRPS patients, families, friends and community

Promote awareness through education of public and professionals

Provide referrals to health care professionals who treat/manage CRPS

Support research

WEB SITE: www.rsdcanada.org

Basic CRPS info, symptoms, diagnosis treatment, management

Offer info on treatment options, alternative treatments, journals, books, support groups, survival tips, latest news, studies, newsletter, practical advice and more.

1 in 60 have lifetime risk of developing CRPS (Pollett Clinic)

CANADIAN REQUESTS TO PARC

0

5

10

20010

10

20

2004

Jan

Feb

Mar

Apr

May

June

July Total number of requests for assistance (through the web site) in 2001 was 41 and in 2004 was 139. The number of requests has nearly quadrupled over the last three years. In the first three months of 2005, 49 requests are more than 2001 total.

SELF-MANAGEMENT PROGRAM

MEDICAL SUPPORT CONTACT PARC DEVELOP PLAN USE ALTERNATIVE

THERAPIES WORK PIECES OF

PUZZLE STAY POSITIVE,

PROVIDE SUPPORT

RESOURCES AVAILABLE

VISIT OUR SITE: www.rsdcanada.org RSDCANADA SURVEY: Why take part? Join P.A.R.C. : latest news, newsletter,

support network Educate yourself, your family Use local community resources

RSD CANADA SURVEY 2004-6

“Facts do not cease to exist because they are ignored”.

Aldous Huxley 1894-1963

RSD CANADA SURVEY 2004-6

First Canadian survey online January 1, 2004 to present day

Huge gap of knowledge about CRPS in the medical community

Approximately 300 respondents Mirror results of USA survey

RSDCANADA SURVEY RESULTS

Onset of CRPS to diagnosis No. of doctors seen before diagnosis Self-reported pain levels of CRPS patients Rating own success

EARLY DIAGNOSIS CRITICAL

Early diagnosis ( <3 mo.) for best prognosis If left untreated, can lead to lifetime of

intractable, chronic pain 0-3 mo. nearly 100% recovery rate 3-6 months after onset: 80-90% recovery rate SURVEY results are much different

ONSET OF CRPS TO DIAGNOSIS

0.00%

5.00%

10.00%

15.00%

< 1 MO 1 MO 2 MO 3 MO 4 MO5 MO 6 MO 7 MO 8 MO 9 MO10 MO 11 MO 1YR-2YR 2-3 YR 3-5 YR5 YR plus UNKNOWN

What does this mean?

0-3 mo. =29.24% 3-6 mo. =19.27% 6 mo-1yr.= 10.96% 1yr-2yr =10.63% 2 yr-3yr=6.64% 3-5 yr = 3.31% 5 yr-20 yr = 3.65% unknown = 14.28%

only 30% diagnosed early when success rate highest

1 in 2 (48.51%) diagnosed in < 6 mo.

3 out of 5 diagnosed within 1 year (59.47%)

1 in 2 or nearly 50% are not diagnosed early

1 in 4 (26.25%) are diagnosed after one year

NO. OF DOCTORS SEEN PRIOR TO DIAGNOSIS OF CRPS

0.00%

5.00%

10.00%

15.00%

20.00%

1 2 3 4 5 6 7 8 9 10+ DK

19.03%

14.88%

12.80%

14.53%

13.84%

8.65%

0.69%

0.35%

2.42%

8.30%

4.50%

NO. OF DOCTORS PRIOR TO DIAGNOSIS

1 doctor = 19.03% 2 doctors = 14.88% 3 doctors = 12.8 % 4 doctors = 14.53% 5 doctors = 13.84% 6 doctors = 8.65% 7 doctors = 0.69% 8 doctors - 0.35% 9 doctors = 2.42% 10 plus doctors = 8.3%

1 in 5 see one doctor 1 in 3 saw 2 or less doctors

(33.91%) 2 in 3 patients saw 3 or

more doctors (66.08%) 4 out of 5 see more than

one doctor WHY SEE MORE THAN

ONE?

PAIN RATING SCALE 0-10

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

mild moderate severe

0

1

2

3

4

5

6

7

8

9

10

DK

OVERALL PAIN RATING

no one responded with 0 or 1 rating 1 in 4 rate pain as a 10 0-3 mild pain = 5.46% 4-6 moderate pain = 22.82% 7-10 severe pain = 70%

OVERALL SUCCESS RATING(%)

0.00%5.00%

10.00%15.00%20.00%25.00%30.00%35.00%40.00%

very

poor

poor

fair

good/e

x. NR

responses(%)

34%

29.79%

17.63%

5.17%

NR

OVERALL SUCCESS RATING

approx. 1 in 3 rated success as 25% or less about 2 in 3 rated success as 50% or less

(POOR) 1 in 6 rated success as FAIR - GOOD (50-75%) 1 in 7 didn’t rate success, (likely would inflate

very poor or poor numbers) 1 in 20 rated overall success as VERY GOOD -

EXCELLENT (75-100%)

WHAT IS THE CURRENT STATUS OF YOUR CRPS?

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

WORSE

BETTER

SAME

Unknown

SURVEY CONCLUSIONS

MUST EDUCATE medical profession about early recognition of symptoms and diagnosis

MUST RECOGNIZE PAIN: pain is grossly under-treated; record pain level as a vital sign

Low success ratings show lack of effective treatments for CRPS

CONCLUSIONS

When not caught early, CRPS is difficult to treat

Make doctors aware of diagnostic criteria More research to find better treatments and a

cure is desperately needed

PARCPO BOX 21026St. Catharines,Ontario CanadaL2M 7X2HELP LINE: Mon.-Thur.After 7 PMTel: 905 934 0261www.rsdcanada.org Charitable Number: 865639629RR0001

“RSD IS NOT A WALK IN THE P.A.R.C.”