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Academy of Family Physicians, the American Academy of Physician
Assistants, and the American Society of Pain Management
Nursing. The letter began with the prescient sentence “A minute
of your time can prevent a lifetime of suffering.” The response
was enthusiastic. Many of the physicians and nurses were on
medical- and nursing-school faculties and requested multiple
copies for their students and fellows. RSDSA members also
asked for individual copies for themselves and other family
members and additional copies to distribute to medical professionals
in their communities.
In addition, RSDSA is publishing its third edition of
evidenced-based Clinical Practice Guidelines (in press) and
the RSDSA Review Digest, a compendium of articles that have
appeared in the RSDSA Review on the diagnosis, treatment,
and management of CRPS. Although the articles are archived
on our website, 42 percent of Americans do not have access to
the Internet and most medical professionals are too busy
to thoroughly search our website. The Digest will be a perfect
companion to the Clinical Practice Guidelines. We expect that
medical professionals will also distribute the compendium to
their patients with CRPS. If you would like to receive any of
our free materials, please call 877-662-7737.
Each year, staff and volunteers exhibit at major medical,
insurance, and school nurse conventions and conferences.
RSDSA believes it is vitally important for its members to attend
new conferences in order to inform the attendees about our
programs and educational materials, our top-notch website,
research funding opportunities, ongoing CRPS clinical trials,
and to discuss with medical professionals how we can work
with them to help their patients and improve their practices.
Shefali Agarwal, MPH, Srinivasa Raja, MD, both from Johns Hopkins School of
Medicine and Bradley Galer, MD, RSDSA board member, discuss the results of an
Internet-based epidemiological study funded by RSDSA.
Patient Support
At RSDSA, we are acutely aware of the devastation caused by
the pain of CRPS. People become disabled and marriages fail.
Families break part and lives are financially ruined. People
become socially isolated and housebound. In our 2005 Internet
Survey, 47 percent of the respondents reported that they had
considered suicide and 15 percent of this group had tried.
Although there is no hard data on the number of CRPS-related
suicides, the donations section of our newsletter includes several
gifts made in memory of individuals who, more often than not,
have taken their own lives. It is chilling.
For this reason, although we do not offer formal patient
services, I do talk to those people who call
or send email, as does my assistant, Gayle
Bonavita, and several of our board members
who have CRPS.
CRPS Education Bills
Through grass-roots initiatives, we have
helped people with CRPS in their efforts
to get CRPS Awareness legislation
passed in Delaware, New York, and Pennsylvania;
similar legislation has been or
will be introduced in New Jersey, Illinois,
Oregon, Michigan, and California. The
legislation mandates that a state’s
Department of Health conduct medical
professional and public education programs
to encourage earlier detection and
appropriate treatment of CRPS.
Jim Broatch talks to attendees at the Academy’s annual meeting in San Diego.
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