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.
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
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 estimated as 1 in 2000.
Based on the Dutch statistics, Canada will have over 9,000 new cases of CRPS each year. In Ontario, the number will be over 4,000 each year so nearly 50% of new cases will be found in Ontario.
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 to four 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: EMail Us!
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 diagnostic criteria (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.
WHEN 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 is:
"This 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."
Pain conditions are written by doctors and health care professionals. Each testimonial shows how the chronic pain patient is living a life despite the pain.
There are several chapters on CRPS including "Living with CRPS", "PARC" and a testimonial by the Executive Director of PARC, a CRPS patient.
READ AND EDUCATE YOURSELF: KNOWLEDGE IS POWER!
What is LDN? How is it used in CRPS? Read the case study on Matt. WHAT'S NEW?
PARC 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. WHAT'S NEW?
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 current articles.
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:
I have been diagnosed with CRPS. What do I do now???
Please take the time to read through our site. It was specifically designed with the patient or professional in mind.
Early diagnosis in the first 0-6 months is critical. 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!
Do you wish to help us make a difference in the war on RSD/CRPS? We appreciate every contribution whether it is monetary or not. There are many ways you can promote awareness where you live. Spread the word with PARC's help. Monetary contributions are tax deductible. To donate and for some ideas, see the DONATIONS page.
PARC is a registered charity which is able to issue tax receipts.