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.

FACTS AND FIGURES

Estimates about the numbers affected in Canada are not yet available. There are no epidemiological studies available. The latest research from the Netherlands indicates that the incidence of RSD/CRPS is 0.5 per 1,000 per year, or 1 in 2,000 per year. Based on a population of 30 million, we can say 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 indicated that:

"1 in 60 has a lifetime risk of getting RSD/CRPS."

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.

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.)

 

NO SINGLE DIAGNOSTIC TOOL

As of this writing, there is no single diagnostic test that will pinpoint a diagnosis of RSD/CRPS. The best way to diagnose RSD/CRPS is by a thorough examination of the signs and symptoms and a careful history taking by a qualified clinician. Thermography is also helpful and measures temperature asymmetry.

THE "MY DOCTOR DOESN'T KNOW ABOUT IT" 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.


WHAT'S NEW?

SUMMER EVENT: RIDE TO CONQUER CRPS 2008

Please visit our RIDE page for details!

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 give it to your staff or patients. Please see our WHAT'S NEW? page for details!

WHAT IS THE LATEST? Whether you are a patient, family member, friend or a professional, please visit our WHAT'S NEW page for the latest research, treatments, drugs, news, or events.


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

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. Please see the link below.

We appreciate every contribution. If you wish to help us make a difference in the war on RSD/CRPS, please read our DONATIONS page.

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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.


 

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!

ENJOY your stay!


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