By Jim Broatch, MSW, Executive Vice President, Director RSDSA
Executive Vice President and Director of RSDSA, Jim Broatch, details why it is crucial that we continue our CRPS awareness efforts beyond November. Awareness is a 365-day effort that we must push forward with in order to make positive change in the world of chronic pain.
First, a standing ovation for all who participated in the fourth Annual Color the World Orange (please visit their page by clicking here). It was an outstanding success and is growing exponentially each year. Billboards in Times Square, New York were just one of more than 100 locations in six countries that turned orange for Color The World Orange. Other locations included Niagara Falls and the Trafalgar Square Fountains in London. In addition, a record breaking 76 proclamations were granted in the US and Canada recognizing Color The World Orange and CRPS/RSD awareness. This is truly an astonishing accomplishment that could not have been made possible with people with CRPS and caregivers who proactively pursue opportunities to promote CRPS.
Hats off to RSDSA’s bloggers who shared their personal journeys each day this month. What an inspiration. I was also amazed at the many selfless individuals who asked family and friends to give to RSDSA in lieu of a birthday gift. We are immensely grateful to everyone who helped to increase awareness of our very little known, rare syndrome. These November events continued the momentum of years past and brought new hope and support for CRPS
My dream, my unceasing prayer is that someday, Complex Regional Pain Syndrome will become a household name, a name as easily recognizable as fever or measles. It is so disheartening to receive emails and phone calls from individuals with CRPS who have traveled to countless doctors searching for a diagnosis for their unrelenting pain that should have been diagnosed as CRPS by their medical providers. We must do better.
How do we begin?
We must continue to share our stories. One very effective suggestion is to approach your daily, weekly, regional newspaper and radio and television station and request to speak with the health editor or a reporter about CRPS, explaining that this is the most painful but least known chronic pain condition in the world. It has been my experience that once reporters become engaged, they are fascinated by CRPS. As a media resource, you can often remain anonymous or only share your first name if you prefer to maintain your privacy. At RSDSA, we can provide information about diagnosis, treatment, and emerging research. Ask your health care professional to help too. RSDSA volunteers and staff are always available for media interviews. We are always looking for writers as a part of our blog series, #TheTuesdayBurn. It is a great way to start sharing your story (email us your story at [email protected]). Through our partnership with The Mighty, we are also always looking for submissions there that will broaden our reach to those that may not know they are affected by CRPS yet.
Our print and broadcast media are consumed with the opioid epidemic with little mention of people suffering with chronic pain; yet one in three Americans is in chronic pain. It’s a national tragedy that those living with chronic pain conditions such as CRPS, are misunderstood, lumped together as potential “drug seekers” rather than people living with the highest-rated pain on the McGill pain scale and CRPS is often not recognized as a true medical condition in need of solutions rather labels. We must amplify our voices and specially call attention to CRPS.
Another way we are helping to create awareness of CRPS is with RSDSA’s two free accredited courses that we have developed for physicians, nurses, and psychologists. We can provide you with flyers about the courses to share with health care professionals in your community or just click here!
Education needs to include not only the health community but also our legislators. We must dissolve the myths and stigmas associated with chronic pain which is a real condition and the number one reason for doctor visits or to seek care in the Emergency Department.
We have also developed easy-to-understand educational brochures which can help you promote CRPS awareness among other professional or lay audiences, such as your employer, local library, religious institutions, etc.:
An excellent synopsis of treating CRPS with physical and occupational therapy
This brochure details the signs and symptoms of CRPS and presents some treatment options
This card describes CRPS from the point of view of a person with the syndrome and some suggestions on how others might help. Cards are free. We only ask for a small good-will donation to defray costs and to support our mission
Make other aware of CRPS by posting RSDSA’s car magnets and proudly wear our t-shirt that’s available in our online store, which you can visit by clicking here. These make thoughtful and inexpensive holiday and birthday gifts for you and loved ones who support CRPS.
I do not have all the answers, but together we can drive awareness, improve research, and help others struggling with CRPS. Please share with me your ideas on how we can promote greater awareness of CRPS. You may email me anytime at [email protected].
Written by Nurse Beth Seickel for the RSDSA Blog
By Samantha Barrett, Special Events Coordinator
