1. WELCOME

2. STORIES OF HOPE Military Man Refused Treatment Suffering Stole her Childhood Ralph’s Story

3. 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.

4. PARC’S MISSION THE SUFFERING OF THESE PERSONS MUST ALSO BE RECOGNIZED

5. 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

6. 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)

7. CANADIAN REQUESTS TO PARC 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.

8. SELF-MANAGEMENT PROGRAM MEDICAL SUPPORT CONTACT PARC DEVELOP PLAN USE ALTERNATIVE THERAPIES WORK PIECES OF PUZZLE STAY POSITIVE, PROVIDE SUPPORT

9. RESOURCES AVAILABLE VISIT OUR SITE: www.rsdcanada.orgwww.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

10. RSD CANADA SURVEY 2004-6 “Facts do not cease to exist because they are ignored”. Aldous Huxley 1894-1963

11. 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

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

13. 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

14. ONSET OF CRPS TO DIAGNOSIS

15. 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

16. NO. OF DOCTORS SEEN PRIOR TO DIAGNOSIS OF CRPS

17. 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?

18. PAIN RATING SCALE 0-10

19. 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%

20. OVERALL SUCCESS RATING(%)

21. 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%)

22. WHAT IS THE CURRENT STATUS OF YOUR CRPS?

23. 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

24. 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

25. PARC PO BOX 21026 St. Catharines, Ontario Canada L2M 7X2 HELP LINE: Mon.-Thur. After 7 PM Tel: 905 934 0261 www.rsdcanada.org Charitable Number: 865639629RR0001 “RSD IS NOT A WALK IN THE P.A.R.C.”