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 CRPS,
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
There have not been any large scale epidemiological studies
conducted in Canada or USA to date.
New figures from The Netherlands indicate evidence based on
the medical records of over 900,000 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
Based on the Dutch statistics, Canada will have over 9,000
new cases of CRPS each year. In Ontario, the number will be
nearly 4,000 each year.
According to PARC's survey only 40% will be
diagnosed in the first three months when the recovery rate is
80-90%. In addition, 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, 1 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.or use our contact form:
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 or the Budapest
criteria 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
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.
STUDY: Hamilton General Study has not been completed.
If you are a patient wishing to help, please visit:
POCKET CARD: Our new
wallet card with "Signs and Symptoms of RSD/CRPS"
is here! The card says it all in one easy, portable format.
READ AND EDUCATE YOURSELF
What is LDN? How is it used in CRPS? Read the case study on
Matt. Read our newsletter.
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
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:
Please take the time to read through our site. It was specifically
designed with the patient or professional in mind. After reading
about RSD/CRPS, if you suspect that someone may have this disease,
it is essential that they do not delay in finding an expert for
prompt medical treatment. Patients and doctors, this is very important!
Early diagnosis in the first 0-6 months is critical.