James W. Broatch, MSW, Executive Vice President, Director
RSDSA is an international patient advocacy organization dedicated to providing support, education, and hope to everyone affected by CRPS while we drive research to develop better treatment and a cure.
What is Complex Regional Pain Syndrome (CRPS)
CRPS also commonly known as Reflex Sympathetic Dystrophy (RSD) is a progressive neuroinflammatory disorder characterized by intense severe pain, swelling, and hypersensitivity to touch. CRPS pain is experienced 24 hours/seven days a week, and is much fiercer than would be expected for the type of injury that occurred. CRPS, often worsens, rather than improves over time and may spread from the original injury site to the whole limb, or to the arm or leg on the opposite side of the body. Here is a link to a video about the experience of having CRPS and the importance of early diagnosis, https://www.youtube.com/watch?v=b49DtFigbbw
RSDSA conducts conferences throughout the United States to provide the latest knowledge on treatment and research, connect individuals with CRPS with each other (too often individuals with CRPS have never met someone else with the same disorder), and provide hope and tools for now and the future. The conferences are filmed and archived on our website.
Recently, RSDSA sponsored a symposium in Chicago, attended by scientists from across the world. The goal of the meeting was to bring together prominent thought leaders involved in Complex Regional Pain Syndrome (CRPS) research to share their ideas and current research, to identify research opportunities that hold the promise of finding the cause and cure of CRPS, and to create an International Research Consortium (IRC). One of the fundamental problems hindering CRPS research is that few labs have access to large numbers of potential clinical trial participants and few labs have the money to conduct large trials. As a consequence, the resulting studies are too small, generally only involve one site, and subsequently are not replicated by other labs. The goal of the IRC is to improve and quicken research that will benefit people with CRPS.
RSDSA is also striving to create a national support network for all individuals affected by the pain and disability of CRPS. We have created a peer-to-peer program which links individuals with CRPS and their support people with others for mutual support, not as mentors but as equals having a conversation, a conversation that will help them learn from each other to develop more satisfactory lives. Individuals are free to reveal their fears and concerns because the person at the other end of the line will have experienced them as well. The end goal is to see themselves not as a disease, but as someone who happens to have CRPS. Concurrently, RSDSA developed a 14-minute video on how to start and maintain a support group.
To learn more about CRPS, please visit the RSDSA website at www.rsds.org or call toll-free at 877-662-7737.