About Us

PARC: About Us

Mission CRPS Support Groups PARC Membership Services Letter to 60 Minutes How To Contact Us

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

To download our PARC flyer, click here.

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 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 serve as a resource for patients with questions about doctors, treatments, and your concerns. No medical advice is given.
  • 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 CANADA

CAMBRIDGE: If you are interested, please e-mail Carla or Contact us.

LONDON RSD/CRPS SUPPORT GROUP

St Joe's Hospital

London Ontario

Please contact:Jeannie

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NIAGARA AREA:

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 SUPPORT GROUP

For further information please contact WILLY.

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TORONTO: Scarborough area support group now forming. Please contact Jean. A venue is already available.

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OSHAWA Area: Group now forming. Please contact us.

OTTAWA: Please contact us at PARC if interested.

VANCOUVER, BC. Please contact us at PARC or for Surrey group information: Coleen Cave click here.

VICTORIA, BC: Group meets third Monday of the month at 7 PM. For details, e-mail: Fern or call: (250) 389 6716


 

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 contacts. Contact us.

PARC MEMBERSHIP SERVICES

NOTICE:

As of January 1, 2011, memberships are tax deductible. Both option 1 and 2 are eligible for a tax receipt.

OPTION 1: ($35per year) DELUXE Membership include 6 services:

  • CRPS SURVIVOR CLUB
  • PARC PEARL ALERT
  • NEWSLETTER
  • ONGOING PHONE / E-MAIL SUPPORT
  • FOR NEW MEMBERS: Self Management Program
  • LEGAL SERVICE: Added Sept. 1, 2011. Please contact us for details.

OPTION 2: ($25 per year) REGULAR MEMBERSHIP: Quarterly newsletter only. No membership services.


 

WHAT ARE THE 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 a contact person near you. 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.


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 so you will need access to a computer and an E-mail 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 E-mail account through http://www.hotmail.com or http://www.yahoo.ca.

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. The newsletter contains the newest 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 benefit from ongoing guidance. PLEASE NOTE: We do not offer medical advice.

5. NEW IN 2011 for DELUXE MEMBERS ONLY: When you join, ask about our new "Self-Management Program for CRPS". It is based on 4years' 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.

6. NEW! LEGAL CONSULT: PARC deluxe members are eligible for this legal service as of Sept 1. Please contact us for details.


HOW CAN I BECOME A MEMBER?

DELUXE MEMBERSHIP***(OPTION 1): For all 6 services, the cost for membership is ONLY $35 CDN or US dollars per year.

REGULAR MEMBERSHIP*** (OPTION 2): If you are interested in the newsletter only, without any extra services, it is $25 CDN or USD.

***Both memberships are now tax deductible.

NOTE: Update 2013: 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.

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 the newsletter also. Your donation is tax deductible. We thank you.


HOW TO SUBSCRIBE:

 

OPTION 1: Download a membership form to mail in.

MEMBERSHIP FORM

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 paper.
2. Include your cheque or money order. 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 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. 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 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: November 2013: Thanks to Discovery Channel there is a film: PAIN MATTERS which chronicles several pain patients. Cynthia Touissant, the last patient has CRPS.:

http://www.painmattersfilm.com

UPDATE: CBS is doing a show each day on the CBS Evening News on Chronic Pain starting Feb. 18,2008.

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NOTE: PARC AWARENESS PACKAGE

If you would like us to send a special package to a medical professional or health care practitioner in your area, please contact us at PARC.


PARC is on Facebook at RSDCANADA:PARC where you can leave us a message.


 

HOW TO CONTACT US

We are on Eastern Standard Time (E.S.T.)

CONTACTING PARC

Please be so kind as to observe our hours. Thank you.

OPTION 1: HELP LINE : Monday-Thursday 7-10 P.M. E.S.T. EVENINGS ONLY PLEASE

If you are not in the Eastern Time zone it would be wise to make an appointment by e-mail. You can E-Mail Us!

OPTION 2: PLEASE LEAVE NAME, NUMBER AND A DETAILED MESSAGE at any reasonable time during the day.

THANK YOU!

We can only return your call if you leave a message with your name and number. Please do so. Thanks!


Tel: (905)934 0261 extension 2

 

You can also E-Mail Us!

 


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