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Lisa Delia, Maria Brown, and Jim Broatch at the 2005 Achilles Walk for Hope and Possibility fundraiser.
RSDSA sponsored a team.
“… [I]n publicizing RSD, we generally focus on the pain,
not the disabilities that come with it-the legs and hands that no
longer work, the bones that become osteoporitic, the joints that
become locked, the muscles that become spastic. … There is an
awful lot we leave out—how a productive member of society
can become too disabled to work or take care of her children.
We don’t discuss the tremendous personal losses—families,
friends, jobs—that RSD wreaks … (4)”
We address many of these issues in our publications, such
as the RSDSA Review (a quarterly newsletter), the Support
Group Newsletter (a bi-monthly electronic publication), and
In Pain, Out of Work, Can’t Pay the Bills, a resource directory
that identifies the governmental and private programs that
can help low-income families obtain treatment and needed
medication, pay their bills, and avoid losing their home.
Originally published in 2001, the directory is now in its third
edition. We publish several brochures as well, such as
CRPS/RSD: Prevention is the Name of the Game, which links
CRPS to sports injuries and the surgeries that traditionally
follow them. This brochure is written for coaches and trainers,
and particularly for athletes, a group we believe is at high
risk for developing the syndrome.
Website
Most people with CRPS or persistent pain learn about RSDSA
by visiting our website, www.rsds.org. In 2005, we had an average
of 37,000 visits per month. Our highest traffic, 57,000 in
April, was driven by a People magazine cover story revealing that
Paula Abdul had been diagnosed with RSD.
Our website houses all of our educational
brochures (in PDF format); videos
or PowerPoint ® presentations from past
international conferences; scientific articles
on the diagnosis, treatment, and management
of CRPS that have appeared in our
quarterly newsletter or in peer-reviewed
journals; links to other professional and
consumer sites; and much more. We
encourage individuals to sign up to receive
free electronic alerts about new discoveries,
clinical trials, articles in the media, legislative
initiatives, and upcoming events.
Srinivasa N. Raja, MD, Director
of Pain Research at Johns Hopkins University
has created a PowerPoint ® presentation,
Diagnosis and Treatment Options
of RSD/CRPS, which can be downloaded
for use during in-service training or for
personal edification.
Join RSDSA
RSDSA is a vibrant organization that is
sensitive to the needs and concerns of
its 6,000 members and the greater
CRPS community. In the Fall 2005 RSDSA Review, Norman
Harden, MD, said, “Without RSDSA, progress in fighting the
syndrome would likely come to a halt. Even basic and essential
Revised Clinical Practice Guidelines
THE THIRD EDITION of RSDSA’s Clinical Practice Guidelines
will be available in hard copy and on the website by the end
of March. In 2004, RSDSA approved a grant to revise the
evidence-based Clinical Practice Guidelines, which had not been updated
since 2002. RSDSA received a grant from the National Organization
for Rare Diseases, Inc. (NORD) to print and distribute the guidelines.
R. Norman Harden, MD, Director, Center for Pain Studies, Addison Chair,
Rehabilitation Institute of Chicago, Chicago, Illinois, edited the guidelines.
Contributing authors were Stephen Bruehl, PhD, Department of
Anesthesiology, Vanderbilt University Medical Center, and Allen Burton,
MD, Department of Anesthesiology and Pain Medicine. The guidelines
include the following five chapters and a treatment algorithm:
❥ Introduction and Diagnostic Considerations
❥ Interdisciplinary Management
❥ Pharmacotherapy of Complex Regional Pain Syndrome (CRPS)
❥ Psychological Interventions
❥ Interventional Therapies
CRPS can be a difficult syndrome to treat, especially if treatment
is offered piecemeal rather than in an interdisciplinary fashion as
recommended. Jim Broatch, Executive Director, says, “Our goal in
writing these guidelines was to make sure that those individuals
suffering with CRPS receive the proper diagnosis and appropriate
treatment. Through education, we hope to minimize patient
losses as much as we possibly can.”
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