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
INTRODUCTION TO RSD/CRPS
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.
GENERAL FACTS AND FIGURES
Estimates about the numbers affected in Canada are not yet
available. There have been no epidemiological studies conducted.
Past research from the Netherlands indicated that the incidence
of RSD/CRPS was 0.5 per 1,000 per year, or 1 in 2,000 per year.
New figures from Holland indicate better evidence based on medical
records of 600,000 Dutch patients. (Please
see our WHAT'S NEW? page for details! )
Based on a population of 30 million, we can estimate possibly
15,000 new cases are diagnosed each year in Canada.
Surprisingly in USA, "Fifty percent of cases go undiagnosed",
reports Robert Schwartzman, MD, leading neurologist and RSD/CRPS
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 theWHAT
IS RSD/CRPS? page.
MEASURING PAIN:
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. (Contact
us for a copy.)
THE "MDDKAI" SYNDROME*
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.
(*My doctor doesn't know about it.)
WHAT'S NEW?
WHAT
IS THIS?
Find out what this beautiful
photo is! See the WHAT'S
NEW page!
PARC POCKET
CARD: Our
brand new wallet card with "Signs and Symptoms
of RSD/CRPS" is here! The card says it all in
one easy, portable format. Carry it to the doctor, hospital,
pain clinic, physiotherapist or ER. Doctors cangive it to clinic
staff or patients.
NEW DIAGNOSTIC TOOLS!!!
New research from
Boston and Haifa (Israel) has found several markers for CRPS
which can now be diagnosed! Please
see our WHAT'S NEW? page for details!
FOR THE 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, news,
or current events.
HOW YOU CAN HELP: IT
TAKES ONLY ONE VOICE TO BE HEARD
We appreciate every contribution whether it is monetary or
not. There are many ways you can promote awareness where you
live. Speak up, leave the literature, and educate your community!.
Make sure everyone who treats you knows about CRPS/RSD. Spread
the word with PARC's help. For some ideas, see the DONATIONS
page.
If you wish to help us make a difference in the war on RSD/CRPS,
please read our DONATIONS page.
GETTING HELP
Please take the time to read through our site. It was specifically
designed with the patient or professional in mind. Please use
the files on the left side of this page to navigate through
our site. If after reading about RSD/CRPS, you suspect that
someone may have this disease, it is essential that they do
not delay in finding an expert for prompt medical treatment.
Please contact us.
PARC TOUR
If you are just visiting us and need a break, take the PARC
Tour and enjoy our water walk ...
Come
for a walk in the PARC!
