RSD is not a walk in the P.A.R.C!




PO Box 21026, St. Catharines, Ontario, Canada L2M 7X2

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 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.

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.

AWARENESS NEEDED

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.


 

WORKING TOGETHER

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 ...

"food 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... "

"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.

For more information contact us.


WHAT'S NEW?

Defining Recovery from CRPS: a patients perspective

McCabe CS RGN PhD et al

This research is a work in progress.

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"LIVING A LIFE IN PAIN: THE STORY OF RSD/CRPS" by Sarah Panas WHAT'S NEW?

MEMBERSHIPS are now tax deductible. Click here.

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 events.

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:

  • promoting greater awareness of CRPS/RSD
  • providing support for patients
  • raising funds for and sponsoring CRPS research

Contributions are tax deductible.DONATIONS


GETTING HELP

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. Please contact us.

 


TOGETHER WE CAN MAKE A DIFFERENCE!

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.

 


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