PARC: About Us
To support, educate and inform persons with CRPS type 1 and
2 (aka Reflex Sympathetic Dystrophy and Causalgia), their families,
friends, the community and the medical professionals treating
CRPS, about the utmost importance of early diagnosis and treatment.The
suffering of these persons must also be recognized.
PARC is a registered charity (non-profit charitable organization).
Our objects are:
a) to educate the public and health care community about Reflex
Sympathetic Dystrophy (RSD) otherwise known as Complex Regional
Pain Syndrome (CRPS) and the needs of persons with CRPS by collecting
and disseminating information on the topic;
b) to provide support, encouragement and other support services
to assist persons living with Reflex Sympathetic Dystrophy otherwise
known as CRPS
c) to fund research into the causes, controls, treatments and
cures for Reflex Sympathetic Dystrophy otherwise known as Complex
Regional Pain Syndrome
To download our PARC flyer, click
RECOGNITION OF RSD/CRPS
RSD/CRPS is not well recognized in Canada. Even though some
doctors are now diagnosing it sooner, many patients aren't seen
soon enough during the six month window when there is an 80-90%
success rate. Others are diagnosed and do not receive the proper
treatment.Why? In medical school, CRPS is not taught. By better
educating the medical community on this rare disease, we hope
that every newly diagnosed patient will be able to have successful
EARLY DIAGNOSIS ESSENTIAL:
In CRPS, "early diagnosis brings the best prognosis."
How does this happen? It begins with promoting awareness in
the medical community about how to recognize and diagnose RSD/CRPS.
For family doctors it is very important to be able to recognize
early signs and symptoms of
the syndrome by the diagnostic criteria in order that they can
make a quick referral to a specialist. For doctors in various
specialties, it is essential that they not only diagnose it
a timely manner, but also provide prompt access to treatment
within the zero to six months of onset.
The benefits of a support group are:
- Groups serve as a resource for patients with questions about
doctors, treatments, and your concerns. No medical advice is
- In addition, many of us have advice to offer about how to
cope with CRPS on a daily basis. Providing emotional support
for members and their families is so very important.
- We provide current information on CRPS through local speakers
who visit the group e.g. doctors, PT's, alternative practitioners,
- By attending the group, we hope that each member will become
better informed about the disease, its symptoms, its treatments
and how to manage it on a daily basis.
- A better understanding of what CRPS is, also leads to patients
taking a more active role in their own treatment plan. KNOWLEDGE
IS POWER. When you have the knowledge about CRPS, you are able
to understand and participate in your treatment plan.
- Plan your recovery by contacting PARC for information and
New group formed in March
2016: Please contact
Krista Spence RN: firstname.lastname@example.org or click here: Krista
OKANAGAN area: Support group now
forming. Please contact Nicole Legg: email@example.com
SURREY, BC. For details, e-mail Coleen firstname.lastname@example.org
CAMBRIDGE: If you are interested, please e-mail
St Joe's Hospital
Please contact: Jeannie
Our Niagara Support group meets in St. Catharines every first
Wednesday of the month at 1:30 PM. We have guest speakers,
current topics, individual help and group discussions. NIAGARA
For further information please contact WILLY.
OSHAWA Area: Please email us below.
OTTAWA: Please contact us below if interested.
Winnipeg area: Paula Orecklin
STARTING A SUPPORT GROUP
If you are interested in starting a support group, PARC has
a group starter kit. PARC can provide a list of speakers and
Both option 1 and
2 are eligible for a tax receipt.
OPTION 1: ($35 per year) DELUXE
- CRPS SURVIVOR CLUB
- PARC PEARL ALERT
- NEWSLETTER (3x year)
- ONGOING PHONE / E-MAIL SUPPORT
- Self Management Program (by appointment)
- LEGAL CONSULT (ask us)
($25 per year) REGULAR MEMBERSHIP: Newsletter
is published 3 times per year. No membership services.
Membership funds go towards maintaining
the website, the HELP LINE, and sending packages to those who
contact PARC for help. Packages also go to medical and health
PARC likes to pay it forward...your membership
fee will help the next person who contacts us. Many callers say,"I
didn't know where to turn" or "I was lost." "My
doctor doesn't know about CRPS."
WHAT ARE THE DELUXE MEMBERSHIP
1. CRPS SURVIVOR CLUB
"My friends don't understand" is a comment often
heard by us. Having someone who truly understands what it is
like to cope with CRPS, is very comforting and reassuring. PARC
can provide you with a contact person near you. We match newbies
with veterans if possible.
Since PARC has an extensive Canadian network, we are able to
find people near your location.We have members in every province
You must have access to a computer with an email address.
2. PARC PEARL ALERT
This list will update you between newsletter issues. You will
automatically be added to the list, if you become a member.
It is only available through E-mail.
For those without a computer, you may use the Internet at your
local public library (usually at no cost) to receive our free
PARC PEARL ALERT. You can receive a free E-mail account through
http://www.hotmail.com or http://www.yahoo.ca.
Our PARC PEARL is published 3 times per year.
Topics include latest news, alternative methods, latest research,
articles from professionals, coping techniques, pain, resources,
citations, references, conference updates, and much more. The
newsletter contains the newest developments, drug and treatment
information not found on this site.We also review and evaluate
current CRPS research.
PARC publishes success stories and we continuously write about
positive ways to help yourself cope and manage. We review personal
experiences with medical/alternative treatments, self management
techniques and patient advice is given.
Contributions are most welcome. You may send your ideas and
letters to us. All letters gratefully received.
For a sample of the PARC PEARL, click
4. ONGOING PHONE/E-MAIL SUPPORT
We offer this service for all members who need advice or support.
Many members do not have any local support and benefit from
ongoing guidance. We do our best to pair veterans with members.
Due to our extensive Canada wide network, we usually locate
a member in their area.
PLEASE NOTE: We do not offer medical advice.
All personal communication is regarded as confidential .Emails
are confidential also.
5. FOR DELUXE MEMBERS ONLY:
When you join, ask about our new "Self-Management
Program for CRPS". It
is based on 27 years' experience in dealing with CRPS from a patient's
perspective. If you want to improve your quality of life and fight
pain successfully, this program can help. It is free with your
deluxe membership. Ask us.It involves a free call by appointment.
6. NEW! LEGAL
CONSULT: PARC deluxe members are eligible for
this legal service. Please contact us for details.
HOW CAN I BECOME A
1): For all 6 services, the cost for membership is ONLY
$35 CDN (current US dollar equivalent)
(OPTION 2): If you are interested in the
newsletter only, without any extra services, it is $25
CDN (or current US dollar equivalent)
***Both memberships are now
NOTE: PARC has not raised membership fees
since its inception in 2002 because we want everyone to continue
receiving our newsletter and member benefits. Instead of raising
rates, we publish the newsletter 3 times per year.
EXTRA MEMBERSHIP DONATION:
We often have people who are unable to afford the newsletter but
need the information it provides. Many CRPS patients are on a
limited income. If you are able, please donate an extra amount
so that someone else who cannot afford the membership, can receive
one.Your donation is tax deductible. We thank you.
HOW TO SUBSCRIBE:
OPTION 1: Download a membership
form to mail in.
OPTION 2: Membership can be purchased
online at PayPal. Major credit cards are accepted.
OPTION 3: For those without
computer access, please:
1. Please print your name, full address and postal/zip code on
2. Include your cheque or money order. Please make cheque
payable to "PARC" and send to:
PO BOX 21026,
St. Catharines, Ontario
CANADA L2M 7X2
LETTER TO 60 MINUTES
NOTE: This letter was written in 2001 to request a program
on CRPS in an effort to bring public awareness and to inform the
medical community. To date, the letter has remained unanswered.
In an effort to bring about more public awareness and educate
health professionals about Reflex Sympathetic Dystrophy (also
known as Complex Regional Pain Syndrome), I am writing your organization
this letter.CRPS is a disabling, devastating disease that can
rob patients of their ability to function as a result of severe
pain. If caught early, CRPS responds well to treatment. If not,
patients are left with intense pain, impaired motor function i.e..
tremors or dystonia; sympathetic nervous system dysfunction i.e..
cold extremity, color changes, swelling; dystrophic skin changes
and sensory changes i.e.. evoked pain. Severe and disabling pain
is the hallmark of this disease.
Little is known about how to diagnose and treat CRPS properly.
There is no single test. Due to this lack of knowledge, by the
time the patient is diagnosed, it is too late and he does not
respond well to treatment. In addition, due to ignorance of proper
treatments, many patients suffer needlessly and become worse.
Even those treatments that are recommended for CRPS can make one
patient improve, but can make another worse.
Another hallmark of this disease is its ability to spread from
limb to limb. As a result, some patients have total body CRPS
and are severely incapacitated. Late in the course of the disease,
treatment is ineffective and patients must deal with chronic,
intense pain .There is a tremendous lack of knowledge about CRPS
even among medical professionals. Many doctors think CRPS does
not exist. My concern is that if a doctor does not think it exists,
isn't he endangering the patient? Isn't the most important rule
of medicine to "do no harm"? CRPS left untreated runs
rampant, spreads and becomes worse. When the pain becomes sympathetically
independent, involving the CNS (central nervous system), CRPS
becomes very difficult to treat and does not respond to conventional
analgesics and treatments. If a doctor hasn't heard of CRPS ,
why are many labs around the world in Holland, Switzerland, Sweden,
Canada and the USA including NIH, studying ways to unravel the
mysteries of this devastating disease. Progress is being made,
it is slow but there is hope.
Let me ask you some questions. Would you, as a patient, want
to be told that it is all in your head? Would you, want to be
told that your disease does not exist? Would you, as a patient,
want the best treatment and diagnosis you could obtain in the
medical system? Would you want to discover that you were misdiagnosed
and left untreated, when treatments could have improved or cured
your condition? Just put yourself in the shoes of any patient
who has CRPS.
Even those who are fortunate to be diagnosed and treated by a
knowledgeable physician, are often not provided with enough psychological
support to cope with this painful, debilitating disease. Support
is truly needed because at present, there is no cure for CRPS.
As a result, many live without hope, in depression, anxiety,
anger and fear. Pain and depression result in more anger or anxiety.
It becomes a vicious circle of pain, depression and anger. Thus,
this disease can not only rob a person of their ability to function
in daily life due to physical limitations but also psychological
problems resulting from chronic pain. Many are in wheelchairs,
walk with canes but all are disabled due to the intensity of the
pain they must try to cope with each day.
Chronic pain affects every part of an CRPS patient's life; his
spouse, family, his friends and all his relationships. Not only
is the disease difficult to live and cope with, but patients must
deal with uninformed, ignorant insurance companies, legal issues
due to the fact that CRPS is not yet recognized fully, and quite
often, lengthy, costly court cases. These situations are difficult
enough for an average person without CRPS, to handle. Add chronic
pain to this list and it becomes quite unbearable.
Having given the overall picture of this disease, I urge you
to investigate it with your usual thoroughness and devote a program
to educating everyone about CRPS. It is only through education
that we can stop late diagnosis and treatment. We can make the
public aware that it must be treated as soon as possible because
if caught in the early stages of the disease, does CRPS respond
well to treatment and can sometimes be reversed. If not, the patient
runs the risk of not only having CRPS long term but having a lifetime
A good doctor is a treasure but an uninformed doctor is dangerous.
We would like to make each doctor that treats CRPS a treasure.
UPDATE: November 2013: Thanks to Discovery Channel there
is a new film: "PAIN MATTERS" which chronicles the lives
of several pain patients. Cynthia Touissant, Founder of For Grace,
has CRPS. Congratulations to For Grace for providing the catalyst
for making this film.
Length 53 minutes.
UPDATE: July 8, 2016: A documentary has been
made about CRPS, the story of his Mother and other CRPS patients.Thanks
to Charles Mattocks, awareness is growing.
Trial by Fire is available on Vimeo and You Tube as well as the
film's website:TRIAL BY FIRE.
Length of film: 54 minutes.
NOTE: PARC AWARENESS
If you would like us to send a special package to
a medical professional or other practitioner, please EMail
PARC is on Facebook at RSDCANADA:PARC.
TO CONTACT US
We are on Eastern Standard Time (E.S.T.) Please
note that we are three hours ahead of British Columbia,
two hours ahead of Alberta and one hour behind
the Atlantic Provinces.
Please be so kind as to observe our hours. Thank you.
OPTION 1: HELP LINE : Monday-Thursday
7-10 P.M. Eastern Standard Time(E.S.T.) EVENINGS ONLY PLEASE
If you are not in the Eastern Time zone it would be wise
to arrange a day and time (appointment) by e-mail in order to avoid
OPTION 2: PLEASE LEAVE NAME,
NUMBER AND A BRIEF MESSAGE at any reasonable time during the day.
We return calls during HELP LINE hours for patients.
We can only return your call if you leave a message with
your name and number. Please do so. Thanks!
HELP LINE: MON-THUR. 7-10 PM evenings
only.We are closed on weekends or holidays.
Tel: (905)934 0261
We look forward to your call and to helping you!.
For patients, there is only someone available during the HELP LINE
For other business, please leave your name, number and brief message
and we will return you call. Thank you!