Our mission is to support,
educate and inform persons with Reflex Sympathetic Dystrophy
(RSD),otherwise known as Complex Regional Pain Syndrome (CRPS)
the community and the medical professionals treating RSD,
about the importance of early diagnosis and treatment. The
suffering of persons with this disease must also be recognized.
In 1995, the name Reflex Sympathetic Dystrophy (RSD) was changed
by the medical community to Complex Regional Pain Syndrome (CRPS).The
aim was to better reflect the nature of the disease and to unify
the 30 or so confusing terms into one appropriate label for
worldwide research purposes. Most doctors use the term CRPS
but patients and families still use the familiar term RSD; we
will use both terms.
FACTS AND FIGURES
Estimates about the numbers affected in Canada are not yet
available. There have not been any large scale epidemiological
studies conducted in Canada or USA to date.
New figures from Holland indicate evidence based on the medical
records of 800,000 Dutch patients which found that CRPS occurs
26.2 in 100,000 patients or approximately 1 in 4,000. In England
the incidence of CRPS is 1 in 2000.
Based on the Dutch statistics, Canada will have 8,777
cases of CRPS each year. In Ontario, the number will be 3,380
Acccording to PARC's survey only 40% will be diagnosed in the
first three months when the recovery rate is 80-90%. In adddition,
66% see 3 or more doctors before being diagnosed.
Surprisingly in USA, "Fifty percent of cases go undiagnosed",
reports Robert Schwartzman, MD, leading American neurologist
and RSD/CRPS expert/researcher.
What about Canada? Latest figures from Nova
Scotia's Northside General Pain Clinic indicate that:
"1 in 60 has a lifetime
risk of getting RSD/CRPS."
That is, over the course of a lifetime, one person in 60 can
expect to contract this disease.
A women is three times more likely to develop
RSD/CRPS than a man. Women 40-60 years of age are mostly affected.
The upper extremities are two times as likely to
be affected as lower extremities. (See Eur J Trauma 2001:27:99-103
Children are also affected and the numbers are on the rise.
Children generally have a better prognosis than adults.
For a further explanation, please see the WHAT
IS RSD/CRPS? page.
Using the McGill Pain Index, many diseases are rated out of
50 on this index. The score for cancer pain is 28 and
for RSD/CRPS pain, a whopping 42.
Due to an enormous lack of education about recognition of symptoms,
diagnosis, treatment and management of RSD/CRPS, it is not well
recognized in the Canadian medical field. Many doctors have
never heard of RSD/CRPS. Without accurate information, RSD/CRPS
is quite often misdiagnosed, diagnosed too late, or no one believes
the patient's pain. Many are told it is "all in their head".
As a result, many patients do not receive the proper treatment
in a timely manner and they suffer needlessly.
FACING CHRONIC PAIN
The book launch
was held in Montreal. It is an extensive Canadian
resource book edited by Odon Productions (Les Productions
Odon) on various pain conditions, treatments, and uplifting
stories from pain patients. Moreover, it
for thought and information about a large number of tools and
treatments, as well as about the psychological and physiological
and social aspects of pain... "
work is also intended for all health care professionals who
want to learn more about the issues and aspects specific to
chronic pain and benefit from the experiences of their colleagues."
are written by doctors and health care professionals. Each testimonial
shows how the chronic pain patient is living a life despite
There are several
chapters on CRPS including "Living with CRPS",
"PARC" and a testimonial by the Executive
Director of PARC, a CRPS patient.
For more information contact
Recovery from CRPS: a patients perspective
McCabe CS RGN
PhD et al
is a work in progress.
A LIFE IN PAIN: THE STORY OF RSD/CRPS" by Sarah Panas WHAT'S
are now tax deductible. Click here.
Our new wallet card with "Signs
and Symptoms of RSD/CRPS" is here! The card says
it all in one easy, portable format. WHAT'S
PATIENT OR PROFESSIONAL:
Whether you are a patient, family member, friend or a health
care professional, please visit our WHAT'S
NEW page for the latest research, treatments, drugs, or
WHY NOT CONTRIBUTE TO PARC'S
MISSION AND GOALS? Do you wish to help further
PARC's mission of informing everyone about the utmost importance
of early diagnosis and treatment?
PARC's goals are:
If you are just visiting us and need a break, take
the PARC Tour and enjoy our walk ..