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's UPDATED LOGO:The green circles represent the common parts of the body which can get CRPS (hand,shoulder,hip,knee,ankle and foot.).
In CRPS motion is very important, so the man/woman is in motion. Motion helps avoid muscle atrophy.
PARC is a registered charity (non-profit charitable organization). Our objects are:
a) to educate the public and health care community about Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD) and the needs of persons with CRPS by collecting and disseminating information on the topic;
b) to provide support, encouragement and hope (and other support services) to assist persons living with CRPS.
c) to fund/sponsor research into the causes, controls, treatments and cures for Complex Regional Pain Syndrome.
RECOGNITION OF RSD/CRPS
CRPS/RSD is not well recognized in Canada. Even though some doctors are now diagnosing it sooner, many patients aren't seen soon enough during the zero to 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 signs and symptoms of the syndrome by the diagnostic (Budapest) 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. Early recongition and treatment of CRPS is cruciall t osuccessful ooutocmes.
WHO TREATS CRPS?
There is no CRPS specialist. CRPS is NOT a specialty in medicine. CRPS is an "interest" in a doctor's practice. It is a doctor who is very interested in treating CRPS patients. It could be an Anesthesiologist, Pain Management doctor, Pain Medicine doctor (trained) Neurologist or even a family doctor with advanced pain training. Travelling where the experts are is more important than a convenient location. CRPS expertise is valued over the location.It's better to go where the experts are.
CRPS/RSD SUPPORT GROUPS
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 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 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 stay positive!
RSD/CRPS SUPPORT GROUPS
1. One year anniversary of Calgary Support Group. (formed in March 2016): Please contact Krista Spence RN: email@example.com or click here: Krista
Facebook: Calgary CRPS Support Group
2. New group formed in 2017 in Edmonton. Please contact Alicia Ellis, RN. firstname.lastname@example.org or click here:Alicia
Facebook: Edmonton CRPS Support Group
SURREY, BC. CRPS support group meets in Surrey. For details, e-mail Coleen email@example.com
Manitoba Meetup: Winnipeg area: Leader Paula Orecklin. Please e-mail.
Paula Orecklin for her number.
Facebook: Manitoba Meet Up.
Sometimes we have a CRPS Coach who has volunteered to talk with you. They do not give medical or legal advice however, they do understand what living with CRPS means.
Kitchener area: CRPS Coach Dan Bellan: Contact PARC for details.
London area: Please contact: Jeannie
Our Niagara Support group meets in St. Catharines every second 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.. Before attending from out of town, please verify the meeting date and time.
OSHAWA Area: Please email us below.
OTTAWA: A group is now forming. For details contact us below.
TORONTO: If you are interestsed in starting a group here please contact us.
Please EMail Us!
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.
If there is not a support group in your area, you can join our PARC Forum, or we can find you a CRPSoach willing to talk with you.Please see below.
PARC MEMBERSHIP SERVICES
Both option 1 and 2 are eligible for a tax receipt.
OPTION 1: ($35 per year) DELUXE Membership includes:
- PARC PLACE - our new online discussion forum!
- PARC PEARL ALERT: breaking news
- NEWSLETTER (3x year)
- ONGOING SUPPORT: through groups, coaches by phone or online.
- CRPS Self Management Program (by appointment only) It is a 30-45" phone consult where you have the opportunity to ask questions and receive valuable information.
OPTION 2: ($25 per year) REGULAR MEMBERSHIP: Newsletter is published 3 times per year. No membership services.
WHERE DO THE FUNDS GO?
Membership funds go towards maintaining the website, the HELP LINE, Technical support and sending packages to those who contact PARC for help. Packages also go to medical and health care professionals.
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." Many are alone and have difficulty coping.
We aim to provide empowerment to patients.
WHAT ARE THE DELUXE MEMBERSHIP SERVICES?
PARC PLACE FORUM is open to members! Register now and join the discussion!
1. PARC PLACE FORUM
"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 has an extensive Canadian network and members in countries such as Germany, Brazil and USA.
2. PARC 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.
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 informationwhich are not found on this site or on the Internet.We also review and evaluate current CRPS research as well as publications and articles on CRPS.We often receive articles from the authors who summarize their work for us.
PARC members continuously write about positive ways to help people cope and manage. We review personal experiences with medical/alternative treatments, self-management techniques and general patient advice is given.
Often our members write their stories. Others write articles on treatments they have tried. Contributions are most welcome.
You may send your ideas and letters to us. Submission must be typewritten and mailed or sent via email..
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. We cannot recommend medications.
All personal communication is regarded as confidential .
5. FOR DELUXE MEMBERS ONLY: When you join, ask about our new "Self-Management Program for CRPS". It is based on nearly 30 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. It involves a free consult by phone arranged by appointment.The date/time of the consult is arranged via email.
HOW CAN I BECOME A MEMBER?
DELUXE MEMBERSHIP***(OPTION 1): For all services, the cost for membership is ONLY $35 CDN (current US dollar equivalent) per year.
REGULAR MEMBERSHIP*** (OPTION 2): If you are interested in the newsletter only, without any extra services, it is $25 CDN (or current US dollar equivalent). We do provide newsletters for those on a low income under certain circumstances.
***Both memberships are now tax deductible.
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 believe it is more important to educate people about CRPS.
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:
FREE CRPS Awareness Bracelet with any new deluxe membership.
OPTION 1: Download a membership form to mail in with a cheque..
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:
PO BOX 20032
St. Catharines, Ontario
CANADA L2M 7W7
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 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.
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 PACKAGE
If you would like us to send a special package to a medical professional or other practitioner, please EMail Us!
HOW TO CONTACT US
Please read this notice before calling us. It will save you time.
We are on Eastern Standard Time (E.S.T.) We are in Ontario. Please note that we are three hours ahead of British Columbia, two hours ahead of Alberta and one hour behind the Atlantic Provinces.
If you are not in the Eastern Time zone, it would be wise to arrange an appointment (day and time) by e-mail in order to avoid disappointment. EMail Us!
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. TEL: 905 934 0261
If you get voice mail, we are busy with another call. Please leave your name and number.
OPTION 2: PLEASE LEAVE NAME, NUMBER AND best times to reach you.
PLEASE NOTE: We return calls during HELP LINE hours for patients.
PARC HELP LINE: MON-THUR. 7-10 PM evenings only. We are closed on weekends or holidays. Any changes will be recorded on our voice mail.
Tel: (905)934 0261
We cannot return your call if you hang up. We can only return your call if you leave your name and number. Thank you.
We have been helping patients since 2002. We look forward to your call and to helping you!
Some of our staff have CRPS. We know what it is like to live with CRPS on a daily basis.
Sincerely, PARC staff