PO Box 20032, St. Catharines, Ontario, Canada L2M 7W7
Our mission is to support, educate and inform persons with Complex Regional Pain Syndrome (CRPS) (formerly known as Reflex Sympathetic Dystrophy, RSD), 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 to give us an exact incidence of CRPS.
- Figures from The Netherlands indicate the incidence of C RPS 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 2,000.
- 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!
HOW DO YOU MEASURE 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 URGENTLY 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 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 ".
Let us clarify this last statement: the consequences of CRPS is felt in the brain. Research has shown that CRPS is not a purely psychological illness but due to the "danger signals" entering the brain from the body, parts of the brain suffer and cause various symptoms. More information from: Moseley, L. PhD and David Butler Explain Pain www.noigroup.com. WHAT'S NEW?
As a result, many patients do not receive the proper treatment in a timely manner and they suffer needlessly. Why does this happen? It happens because doctors are not able to recognize the signs and symptoms unless they know the Budapest criteria. (Budapest Criteria).
Every doctor should have a copy. If you are a patient, please give your doctor a copy!
SEPTEMBER 1, 2020.
PARC PEARL Newslettter will be ready September. 1.
Get your copy of the latest news on CRPS, latest developments and emerging therapies.
TOPICS: Floating, 2020 CRPS Research, LILT, Virtual Reality,Your Medical Record:Why is it Important?, Pain Medicine Training Program, Bits and Pieces.
Get your copy!
OCTOBER: PAIN CONFERENCES in BC and ALBERTA
MONTREAL RESEARCH: PARC is raising funds to help start a clinical trial of a new drug compound for CRPS.You can read about it at: MONTREAL research. Donations of $20 and over will receive a tax receipt. Donate online or offline.(Yellow DONATE button, left hand green column.) Thank you!
TORONTO CRPS CONFERENCE October 26, 2019.
Our warmest thanks to our speakers, Dr. Arash Taghvai, Dr. David Shulman and Dr. Tara Packham PhD (McMaster University) for their expertise on CRPS and their ability to communicate it effectively. Each of the speakers engaged the audience and patiently answered questions.Thanks to the audience who politely listened and turned off their cell phones so we could all hear effectively!
Special thanks to Jean Pamenter, PARC Director, who sponsored lunch and other conference costs.
OCTOBER CRPS Conference slides (Power Point) available from Dr. Packham and Dr Shulman. Search the DOWNLOADS page.
DO YOU WISH TO 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 encouragement and support for patients
holding events to further establish our mission of early diagnosis
raising funds for CRPS research
PARC is a registered charitable organization. Please note that contributions of $20 and over are tax deductible.
In addition, 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 articles.
EARLY DIAGNOSIS IS ESSENTIAL: GETTING HELP
Thought for the day:
“Whatever loss, pain or tragedy
you have experienced,
you can get through.”
I have been diagnosed with CRPS. Now what?
Please take the time to read through our site. It was specifically designed with the patient and 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 he/she does not delay in finding an expert for prompt medical treatment.
Patients and doctors, this is very important!
HOW CAN I HELP PROMOTE CRPS AWARENESS?
When is Colour the World Orange Day? It is the first Monday in November each year.
You can help us promote awareness by ordering orange CRPS Awareness Bracelets!
The bracelet text reads "RSD/CRPS Awareness" and "P.A.R.C. www.rsdcanada.org".
Ways to Promote Awareness:
1. Contact your local newspaper and tell your story.
2. Wear orange on November 4 and/or your bracelet.
3. Turn a building Orange for Awareness day i.e. a local landmark, city hall, well known building.
4. Hand out PARC flyers. Contact us.
5. Contact us for more ideas.
Please see the DONATIONS page.
Thank you for your support.
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),.
It is about 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,
TOGETHER WE CAN MAKE A DIFFERENCE!
Do you wish to help us make a difference in the war on CRPS/RSD?
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 for donations over $20.
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