MISSION
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.
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
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 85%
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
treatment.
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 symptoms of the syndrome 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.
CRPS/RSD SUPPORT
GROUPS
The benefits of a support group are:
- We do not give medical advice but serve as a resource for
patients with questions about doctors, treatments, and your
concerns.
- 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,
etc.
- By attending the group, we hope that each member will become
better informed about the disease, its diagnosis and treatments
and how to manage it.
- 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.
RSD/CRPS SUPPORT GROUPS IN ONTARIO
NIAGARA AREA:
We have a support group which meets every first and
third Tuesday of the month at 10: 30 AM- NOON.
We have guest speakers, current topics, individual help and
group discussions.
We are at a new location. For meeting dates contact
us.
CAMBRIDGE: If you are interested, please e-mail
Carla. Group now forming.
TORONTO: Darrell Stanley Tel: 416 245 8523.
NOTE: This group is independent of PARC.
OTTAWA: Please contact
us at PARC if interested. Now forming.
VANCOUVER, BC. Please contact
us at PARC is interested.
VICTORIA, BC: Now forming: Please
contact us at PARC or e-mail: Fern
(click on name).
STARTING A SUPPORT GROUP
If you are interested in starting a support group, we have
a starter package of information and can provide you with a
list of speakers and contacts.
Contact us.
PARC MEMBERSHIP
SERVICES
FREE GIFT: BONUS!!!
New members will receive our PARC
POCKET CARD which lists signs and symptoms of CRPS,
when to suspect CRPS and early recognition signs.
OPTION 1: DELUXE Membership services include:
- CRPS SURVIVOR CLUB/CHAT
- PARC PEARL ALERT
- NEWSLETTER
- ONGOING PHONE / E-MAIL SUPPORT
- DISCOUNT ON CRPS EVENTS
- FOR NEW MEMBERS: SMP CRPS
DELUXE MEMBERSHIP SERVICES
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 an E-PAL. You must have access to a computer
with an EMail address. For those without computers penpal services
are also offered by phone or through the newsletter. You can
also visit the chat room.
2. PARC PEARL ALERT
We maintain a list of people who have CRPS. The list keeps
everyone updated on the latest happenings in the CRPS field.
It is called PARC PEARL ALERT. (NOTE: This is NOT a listserv
not a newsletter.) 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 EMail so you will
need access to a computer and an EMail address.
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 EMail account through
http://www.hotmail.com or http://www.yahoo.com. Contact us for
details.
3. NEWSLETTER
Our PARC PEARL is published four times a year.
Topics include latest news, alternative methods, latest research,
articles from professionals, coping techniques, pain, resources,
citations, references, conferences, and much more.( It contains
the latest developments, drug and treatment information not
found on this site.)
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
here
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 need ongoing
guidance. PLEASE NOTE: We do not offer medical advice.
5. DISCOUNT for MEMBERS
Members will receive a 15% discount on registration fees for
CRPS EVENTS/Conferences presented by PARC in Canada.
NEW IN 2008!
6. As of JANUARY 1, 2008, for NEW MEMBERS ONLY: When
you join, ask about our new "Self-Management
Program for CRPS".
-----------
HOW CAN I BECOME A MEMBER?
DELUXE MEMBERSHIP
(OPTION 1): For all five services, the cost for membership is
ONLY $35 CDN per year in Canadian dollars.USA
nd International rates are available on request.
REGULAR MEMBERSHIP
(OPTION 2):
If you are interested in the newsletter only, without any extra
services, it is $25 CDN.
US and International rates available on request.
NOTE: Mailing and production costs have increased recently.
Postage to USA and International countries have also increased
substantially. However, PARC will not raise membership fees as
we want everyone to continue receiving our newsletter and member
benefits.
We often have people who are unable to afford the newsletter
but need the information it provides. If you are able, please
donate extra so that someone else who cannot afford the membership,
can receive the newsletter also. We thank you.
HOW TO SUBSCRIBE:
OPTION 1:
Be sure to completely fill in the contact
form so that we can help you quickly. Contact us at PARC.
OPTION 2: For those without computer access, please do
the following two things:
1. Please print your name, full address and postal/zip code on
paper.
2. Include your cheque or money order (no credit cards please).
Please make cheque payable to "PARC"and send to:
PARC
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.
Dear Friends,
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 ie.
tremors or dystonia; sympathetic nervous system dysfunction i.e..
cold extremity, color changes, swelling; dystrophic skin changes
and sensory changes die. evoked pain. Severe and disabling pain
is the hallmark of this disease.
Little is known about how to diagnose and treat CRPS properly.
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 (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 SD 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 improper 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
of pain.
A good doctor is a treasure but an uninformed doctor is dangerous.
We would like to make each doctor that treats CRPS a treasure.
Sincerely,
The PARC
UPDATE: January 28, 2006: 60 Minutes finally did a show on Chronic
Pain. Now for a show on CRPS....
UPDATE: CBS is doing a show each day on the CBS Evening News
on Chronic Pain starting Feb. 18,2008.
=========================================
NOTE:
***If you would like us to send a special PARC AWARENESS
LETTER or package to a medical professional or practitioner in
your area, please contact us at PARC.
HOW TO CONTACT US
We are on Eastern Standard Time (E.S.T.)
Please be so kind as to observe our hours. Thank you.
PLEASE NOTE: Hanging up when you get the recorded
message will not not help us find you and return your call. We cannot
reply without your name and number. Please leave us a detailed message.
We will return your call as soon as possible. THANKS!
HELP LINE OFFICE HOURS: Monday-Thursday 7-10 P.M. E.S.T.
EVENINGS ONLY
OR LEAVE A DETAILED MESSAGE at any time.
NOTE: Should you be unable to talk with us during our office
hours, let us know a ahead of time. We can still assist you.
THANK YOU.
Tel: (905)934 0261
You can also E-Mail Us!
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