CRPS

1
WELCOME
2
STORIES OF HOPE

• Military Man Refused Treatment
• Suffering Stole her Childhood
• Ralphs Story

3
PARCS 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
PARCS 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.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 ( lt3 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
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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-3yr6.64
• 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 lt 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
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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
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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

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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 didnt rate success, (likely would inflate
  very poor or poor numbers)
• 1 in 20 rated overall success as VERY GOOD
  -EXCELLENT (75-100)

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WHAT IS THE CURRENT STATUS OF YOUR CRPS?
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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

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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

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RSD IS NOT A WALK IN THE P.A.R.C.
PARC PO BOX 21026 St. Catharines, Ontario
Canada L2M 7X2 HELP LINE Mon.-Thur. After 7
PM Tel [phone] www.rsdcanada.org
Charitable Number 865639629RR0001