PARC: Promoting Awareness of RSD and CRPS in Canada

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 medical records of 800,000 Dutch patients which found that CRPS occurs 26.2 in 100,000 patients. (Please see our WHAT'S NEW? page for details! )

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 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.

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 IS THIS?

Find out what this beautiful photo is by clicking on the link below!

WHAT'S NEW?

Researchers from the University of Liverpool said a dose of a blood product called intravenous immunoglobin (IVIG) significantly reduced pain in almost half of patients with CRPS.

Details on the WHAT'S NEW page.

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.

UPCOMING DIAGNOSTIC TOOLS!!! New research from Boston and Haifa (Israel) has found several markers for CRPS.

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.

HOW YOU CAN HELP: IT TAKES ONLY ONE VOICE TO BE HEARD

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. Make sure everyone who treats you knows about CRPS/RSD. Spread the word with PARC's help. For some ideas, see the 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 topics 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.

PARC TOUR

If you are just visiting us and need a break, take the PARC Tour and enjoy our walk ..

A new walk is coming soon!.

Come for a walk in the PARC!