INTRODUCTION
PARC is acutely aware of the need for accurate CRPS information
for the public, professionals and patients in Canada. As a result,
we are conducting Educational Programs currently based in the
Golden Horseshoe area ( St. Catharines, Hamilton, Toronto, Oshawa
districts). We will be holding many more INFO NIGHTS so that doctors
will become aware and patients will be informed We want CRPS to
become common knowledge just as diabetes or heart disease.
Since the spring of 2005, we have held two CRPS INFO NIGHTS and
we plan many more! For further information on the next upcoming
event, please watch the WHAT'S NEW? page. Details will be made
available soon!
If you are looking to have a CRPS INFO NIGHT in your area, please
contact us at PARC.
CRPS INFO NIGHT: NOV.
4, 2005.
As part of NATIONAL PAIN AWARENESS WEEK in Canada, PARC's second
INFO NIGHT was held at the Rivers of Life International Ministries
in Toronto. Our guest speaker was Dr Rhydderch, who drove all
the way from Hamilton in rush hour traffic after a long day at
work treating CRPS patients. After 32 blocks on his clinic patients,
he must have been very tired, but he gave us a great presentation.
We appreciated his lecture on how to recognize, diagnose, treat
and manage CRPS. Questions from the audience centered around possible
new treatments and if they were available in Canada.
We want to thank the special volunteers at the Rivers of Life
Ministries for helping us make the evening run smoothly:
Pastor R Torres and family, Paster S Torres, Hudson (aka Houdini),
Fely, Eunice, Helen, and Edna. Thanks also to our Toronto group,
Sharon, Bill and Aron for their hard work and support! Thanks
to Bryan for our display table. We could not have managed without
you all!
CRPS INFO NIGHT: MAY 27, 2005.
The first event of its kind, a CRPS Information Night in Canada
was held in St. Catharines on May 27th. The response to this event
was better than expected with 105 registering and 85 attending.
PARC was still receiving calls to book a seat on the day of the
event. We also had walk-ins from the neighborhood. The hall was
filled with patients, families and friends seeking current CRPS
information. From our telephone poll, we knew that many had seen
our ads in Niagara this Week, the community newspaper which was
one of our sponsors. With their help we were able to advertise
in the entire Niagara area from Grimsby to Fort Erie reaching
over 185,000 households. The pleasant surprise was that people
came from Toronto, London, Hamilton, Mississauga, Strathroy, Fenwick,
Ridgeway, Niagara Falls, Welland and Port Colborne.
WELCOME SPEECH:
"For those of you who don’t know us, we are Promoting
Awareness of Reflex Sympathetic Dystrophy and Complex Regional
Pain Syndrome in Canada or PARC for short. We began informally
in 1995, as patients helping patients. So great was the need for
support, information and advice, that we formally incorporated
as a non–profit organization in 2001. Since then, requests
for assistance through our web site from 2001-2004 have quadrupled
and continue to increase every month. Now we get as many requests
in one month as we used to get in all of 2001. Our web site: www.rsdcanada.org
has a great deal of useful information about this syndrome and
was written by a long term patient. There is also a section for
professionals, What’s New page, latest research, alternative
treatments list compiled by patients, photon therapy, further
resources and a quarterly newsletter.
We also run an ongoing RSD CANADA survey through our web site:
www.rsdcanada.org as well as provide information, support and
advice for those diagnosed. We give them a road map to follow
and provide as many options as possible for managing CRPS on a
daily basis. Two of our board members are long term patients
and have combined experience of over 40 years in dealing with
CRPS.
PARC also supports RSD research at McGill University under the
leadership of Dr Gary Bennett who has been studying this syndrome
for over 30 years. Last August, we visited the lab, met all the
researchers and saw the current projects underway.
PARC’s mission is to:
a) support, educate and inform everyone about the utmost
importance of early diagnosis and treatment.
Early diagnosis is the key to a good prognosis. We know from
the survey that many patients are diagnosed too late simply
due to lack of education about CRPS. Some are left untreated,
given improper treatment and others live with chronic pain every
day.
b) Most of all, the suffering of these persons must
be recognized.
From the first RSD CANADA Online Survey on our web site, we are
able to gather data about our situation in Canada. From responses
so far, we know that:
a) most people see 4 doctors before being diagnosed;
some as many as 9 or 10
b) the pain rating scale, 0 being no pain and 10 the worst pain,
has most responses in the 6-10 range; the highest responses
being 8/10 and 10/10
The survey’s pain rating scale corresponds with the McGill
Pain Index Scale where cancer pain is rated 28 and RSD/CRPS
pain is a whopping 42 out of 50.
From calls to our HELP LINE, we have observed
the following:
Due to a huge lack of education about the facts of this syndrome,
CRPS patients are told many things:
a) “it is all in your head, “
b) “you need to see a psychiatrist “
c) “you can’t be in that much pain “
d) “learn to live with it”
Another commonly heard statement is: “my doctor
doesn’t know about it”.
So, what can we do? PARC will change this attitude through educating
the medical community, and the public. We want CRPS to become
as well known as diabetes.We can do it with your help. Those of
you with CRPS need to speak out, educate those professionals who
treat you and make sure they get the correct information about
this disease in order to treat you more effectively.
PARC is on a mission to educate every doctor in Canada about
CRPS, so that early diagnosis can bring an early recovery. Education
is the key to treating patients early and effectively as well
as giving them therapy options they need to survive.
We know that “RSD is not a walk in the PARC” and
will strive to help those who need it the most."
WHAT IS RSD?
LECTURE BY:
DR G RHYDDERCH MD FRCPC
ANESTHESIOLOIGST AND PAIN MANAGMENT
HAMILTON PAIN CLINIC
Information from this presentation is in the June
issue of the PARC PEARL 2005.
MAY 27th PHOTOS
Sharon Shore introduces the Welsh doctor who studied
in London, England and immigrated to Canada in the seventies.
He began treating CRPS at the Hamilton Pain Clinic in 2002.
Dr Rhydderch prepares to address the audience
at the packed hall in St.Catharines. Slides covered symptoms,
diagnosis, treatment and management of CRPS, world research, ketamine
and thalidomide treatments.
Barbara Barry, VP, thanks Dr Rhydderch, expressing
the wish that we could clone him.
After the 40 minute presentation, the tough questions
from the audience begin. Question period lasted 45 minutes giving
everyone ample time. Afterwards, patients surround the doctor's
table with more questions.
Audience member tells her story of early diagnosis
and treatment of CRPS
Helen asks about ketamine treatments in Canada.
Dr Rhydderch says it is coming soon.
