RSDSA Leads the Way for Research, Education, and Awareness
By James W. Broatch, MSW

Nearly 142 years ago Dr. Silas Weir Mitchell, a Union Army surgeon, coined the term causalgia (Greek for "burning pain") to describe the excruciating pain he observed while treating David Schiveley, a 17-year-old soldier wounded at Gettysburg. The gunshot wound had healed, yet Schiveley was still suffering unbearable pain.

Since then, the syndrome has acquired other names, e.g., Sudeck's Atrophy, traumatic arthritis, minor causalgia, posttraumatic osteoporosis, posttraumatic pain syndrome, posttraumatic oedema, posttraumatic angiospasm, shoulder-hand syndrome, reflex sympathetic dystrophy, and recently, complex regional pain syndrome Types I and II (1). Scientists and clinicians are still baffled by this little-known, poorly understood collection of signs and symptoms. What causes it? Why does it develop in one person and not in another with the same injury? Why does it occur in more females than males? Why do children and teens with this syndrome generally get better while most adults (80 percent in one prospective study) cannot resume prior activities (2)?

These are only some of the issues that the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) deals with every day. RSDSA was founded in 1984 by Audrey Thomas and Rosalyn Davis of Haddonfield, New Jersey. Their daughters had developed the syndrome and were being treated at Thomas Jefferson University Hospital in Philadelphia by Dr. Robert Schwartzman. He encouraged them to start an organization to raise money for research. The organization's mission was broadened to include patient support, creation of an CRPS patient database, awareness, and education.

Patient Support

RSDSA does not offer direct patient services per se; however, I talk to those patients who call, as does my assistant, Gayle Bonavita, and several of our board members who have CRPS communicate with patients via e-mail or phone.

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 a 2005 Internet-based survey of 1,362 people with CRPS conducted by Johns Hopkins School of Medicine and funded by RSDSA, 47 percent of the respondents reported that they had considered suicide and 15 percent of this group had tried.The donations section of our newsletter includes several gifts made in memory of individuals who, more often than not, have taken their own lives.

Presently based in Milford, Connecticut, RSDSA has two full-time and two part-time employees and is guided by a talented 10-member board of directors, four of whom have CRPS. We are guided on medical, treatment, and research issues by a Scientific Advisory Committee led by R. Norman Harden, MD, and Srinivasa N. Raja, MD, and comprised of some of the key thought leaders on CRPS. RSDSA has grown into a national, not-for-profit organization whose annual revenue is over $600,000, 90 percent of which is spent on research and educational programming.

Research

RSDSA is committed to encouraging research into the cause and cure of CRPS. Each year, we fund at least two research grants (up to $50,000 each). Since 1992, RSDSA has funded $732,665 in fellowships and research grants. Recent RSDSA-funded grants are Treatment of Complex Regional Pain Syndrome Type I by Nitroglycerine, A Web-Based Epidemiological Survey of CRPS-I, Identification of CRPS Subtypes and Effective Treatments, Changes in CSF Cytokine levels in Reflex Sympathetic Dystrophy, Validation of Revised Diagnostic Criteria for CRPS/RSD, and Noninvasive Investigation of Human Brain Mechanisms Associated with the Development and Treatment of RSD. Detailed application guidelines can be found by clicking here.

Incredibly, medical professionals and the public are still largely unaware of this intensely painful and potentially debilitating syndrome. A 1999 epidemiology study published in PAIN reported that the mean number of different physicians who evaluated a CRPS patient prior to being seen at a pain center was 4.8 (3). Our 2005 Internet-based survey reported that 56 percent of the respondents saw more than four physicians prior to being diagnosed with CRPS-not much of an improvement.

Awareness and Education

With the assistance of our Scientific Advisory Board, we have developed a number of informative educational brochures. One of the most widely distributed is a screening tool for medical professionals-a laminated, two-sided, wallet-sized card that lists the signs and symptoms of CRPS Type I on one side and provides a pain rating scale on the other. It was an instant hit. We have mailed the card along with an informative cover letter to members of the American 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 robust and far-reaching. 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.

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 Web site, research funding opportunities, and ongoing CRPS clinical trials, and to discuss with medical professionals how we can work with them to help their patients and improve their practices.

This year, 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 Web site, 42 percent of Americans do not have access to the Internet and most medical professionals are too busy to thoroughly search our Web site. 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.

Government Initiatives

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, 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.

In 1999, RSDSA was instrumental in convincing the Social Security Administration to issue a special ruling on how to adjudicate CRPS claims. We continue to receive letters and e-mails from members who have used our information to get their claims approved.

CRPS, Workers' Compensation, and the Insurance Industry

Injured employees with CRPS do not fare well in the Workers' Compensation (WC) program. Of the 1,362 people who completed the Web-based survey, 41% reported being injured at work; however, only a few of them obtained workers' compensation benefits. Too often, the relationship between an injured worker and the WC insurance carrier erupts into a war. Treatment is frequently delayed and denied. Keep erupts

In 2005, RSDSA exhibited at the conferences of two major workers' compensation groups, the Risk and Insurance Management Society and Case Management Society of America. We view these conferences as opportunities to reach out to case managers and risk managers, some of whom still view CRPS as a nebulous, expensive, and frequently fraudulent claim. We launched a special newsletter, Working Together, Ensuring a Brighter Future, at these conferences. Our goal is to develop a mutually beneficial relationship. We will distribute our new Clinical Practice Guidelines to the insurers to encourage early intervention and appropriate treatment, enabling individuals with CRPS to recover and return to work.

Patient Education

Linda Lang, an RSDSA board member and coauthor of Living with RSDS, described the tremendous losses experienced by an individual with CRPS.
"… [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 Web site. 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, On Diagnosis and Treatment Options of RSD/CRPS, that can be downloaded for use during in-service training or for personal edification.

Benefits of Membership in 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, R. Norman Harden MD said, "Without RSDSA, progress in fighting the syndrome would likely come to a halt. Even basic and essential information, such as how best to make the diagnosis and what causes the disease, is lacking, and these are traditional topics funded for research by RSDSA."

We encourage you to join RSDSA. Help us to promote greater awareness of CRPS among your medical colleagues and to improve the lives of individuals with CRPS and their families.

Together we can make a huge difference.

References

1. Hicks MS, Janig W, Boas RA, ed. Reflex Sympathetic Dystrophy. Kluwer, 1990.
2. Veldman HJM, Reyen HM, Arntz R, Goris JA. Signs and symptoms of reflex sympathetic dystrophy: Prospective study of 829 patients. The Lancet. 1993;342;1012-1015.
3. Allen et al. Pain. 1999;80:538-559.