MISSION
Support, educate and inform persons with Reflex Sympathetic Dystrophy
(RSD), their families, friends, the community and the medical
professionals treating RSD, about the utmost importance of early
diagnosis and treatment of RSD.
PARC is a non-profit 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 RSD (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
RSD/CRPS is not well recognized in Canada. Even though some
doctors are now diagnosing RSD 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.
In RSD, "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 an RSD specialist. For doctors in various
specialties, it is essential that they not only diagnose RSD
in a timely manner, but also provide prompt access to treatment
within the first six months.
RSD SUPPORT GROUPS
The benefits of a support group are:
- We could 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 RSD on a daily basis. Providing emotional support
for members and their families is so very important.
- We could also provide current information on RSD through local
speakers who visit the group e.g.. doctors, PTs, alternative
practitioners, etc.
- By attending the group, we hope that each member will become
better informed about the disease, its diagnosis and treatments.
- A better understanding of what RSD is, also leads to patients
taking a more active role in their own treatment plan. KNOWLEDGE
IS POWER. When you have the knowledge about RSD, you are able
to understand and participate in your treatment plan.
NOW FORMING: RSD SUPPORT GROUP
LONDON/BRANTFORD/WATERLOO REGION:
If you are interested in joining an RSD group in the London
area, please contact Tony. Special thanks to Tony McPhee and
Pam A. who are forming this group.
Tel: (519) 435-0439 or rsdmcphee@sympatico.ca
SUPPORT GROUP IN ONTARIO
If you are interested in forming a support group anywhere in
Ontario, we can provide you with advice and a starter package
of information and contacts. If you are interested, please contact
us.
PARC MEMBERSHIP
SERVICES
FREE BONUS!!!
For signing up as a PARC member, you will receive
via regular post, a free personalized bookmark hand lettered
with beautiful calligraphy on original decorated paper. Each
bookmark is designed to be unique and will be inscribed with
your name.
Membership services include:
- EMail/PENPAL Service
- PARC PEARL ALERT
- NEWSLETTER
- RSD REFERENCE Service
- MEMBER DISCOUNT
MEMBERSHIP SERVICES
1. E-PAL/PENPAL
"My friends don't understand" is a comment often
heard by us. Having someone who truly understands what it is
like to cope with RSD, is very comforting and reassuring. PARC
can provide you with an E-PAL. You must have access to a computer
with an EMail address. Penpal services are also offered through
the newsletter.
2. PARC PEARL ALERT
We maintain a mailing list of people who have RSD (or anyone
with an interest). The list keeps everyone updated on the latest
happenings in the RSD field. It is called PARC PEARL ALERT.
(NOTE: This is NOT a listserv NOR 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
Beginning in the fall, the PARC PEARL will be published four
times a year. Topics will include latest news, alternative methods,
latest research, articles from professionals, coping techniques,
pain, resources, citations, references, conferences, and much
more.
Contributions from members or non-members are most welcome.
You may send your ideas and letters to us. All letters gratefully
received.
Members receive complimentary newsletters with their membership
fee.
For a sample of the PARC PEARL, click
here
4. RSD REFERENCE SERVICE
Included in your membership, we offer a reference service which
will include a question about RSD (one question per person).
e.g. Does CRPS spread? Our reply would be exactly where you
could find proof of this in the latest literature. This query
takes a great deal of time to search. Please allow a reasonable
time for an Email response(one week minimum). NOTE: No medical
advice will be given.
5. DISCOUNT for MEMBERS
Members will receive a 15% discount on registration fees for
RSD Conferences presented by PARC in Canada.
HOW CAN I BECOME A MEMBER?
For all these services, the cost for membership is ONLY $35 per
year in Canadian dollars. USA rate is $25 USD (in US Dollars).
International rates available on request.
RECEIVE YOUR FIRST NEWSLETTER BY SIGNING UP NOW!!
If you are interested in becoming a member of PARC, please do
the following two things:
1. Send your name, full address and postal/zip code to: rsdinfo@becon.org
2. Please send your cheque or money order (no credit cards please)
to us at:
PARC MEMBERSHIP
PO Box 21026 St. Catharines, Ontario
Canada L2M 7X2
LETTER TO 60 MINUTES
NOTE: This letter was written to request a program on RSD 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.RSD is a disabling, devastating disease that can rob
patients of their ability to function as a result of severe pain.
If caught early, RSD responds well to treatment. If not, patients
are left with intense pain, impaired motor function ie. tremors
or dystonia; sympathetic nervous system dysfunction ie. cold extremity,
color changes, swelling; dystrophic skin changes and sensory changes
ie. evoked pain. Severe and disabling pain is the hallmark of
this disease.
Little is known about how to diagnose and treat RSD 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
RSD 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 RSD 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 RSD
even among medical professionals. Many doctors think RSD 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"? RSD left untreated runs
rampant, spreads and becomes worse. When the pain becomes sympathetically
independent, involving the CNS (central nervous system), RSD becomes
very difficult to treat and does not respond to conventional analgesics
and treatments. If a doctor hasn't heard of RSD (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 RSD.
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 RSD.
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 RSD 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 RSD, 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 RSD. 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 RSD respond
well to treatment and can sometimes be reversed. If not, the patient
runs the risk of not only having RSD 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 RSD a treasure.
Sincerely,
The 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.
OFFICE HOURS: Monday-Thursday 7-10 PM EVENINGS ONLY
Tel: (905)934 0261
E-Mail Us!
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