RSDSA: What We Do For Those In Pain
By Guest Blogger Samantha Barrett, special events coordinator, Reflex Sympathetic Dystrophy Syndrome Association
RSDSA is a not-for-profit organization that has been helping the RSD/CRPS community for more than 31 years.
If you are not familiar with these abbreviations—the condition is called complex regional pain syndrome (CRPS) and reflex sympathetic dystrophy (RSD). These terms refer to a chronic, systemic disease with severe pain that may include changes in the skin and swelling.
Our group provides hope and support by creating educational opportunities, awareness and fundraising events, and by being a driving force behind research for better treatments and a cure.
But many people only see what we post online. We do so much more. We want you to give you an insider’s glimpse into some of our ongoing initiatives.
Insider’s View To How We Help
RSDSA has developed a continuing medical education (CME)-accredited educational program for physicians, physician assistants, nurse practitioners, nurses, and other clinicians on the diagnosis, treatment, and management of CRPS.
Currently, most individuals with CRPS will see five doctors before being properly diagnosed.
We want to ensure that all individuals who develop CRPS receive an earlier diagnosis. Our goal is that medical professionals identify CRPS quickly, treat it appropriately or refer to a specialist.
We also commissioned an emergency department physician to write Tips for Managing Complex Regional Pain Syndrome, https://rsds.org/wp-content/uploads/2014/12/Tips-for-Managing-Complex-Regional-Pain-Syndrome.pdf.
The article suggested an IV ketamine protocol to quell CRPS pain flares with people who end up in the emergency department (ED). Not opioids—ketamine. Recently, when we exhibited at the American College of Emergency Physicians meeting, we discovered that many ED physicians were already using the suggested protocol just one month later!
Young People and RSD/CRPS
This summer, RSDSA co-sponsored the first pediatric pain camp at the Center for Courageous Kids. Nineteen children along with their families enjoyed three days of horseback riding, boating, fishing, archery, and so much more. It was a dream come true for all. We will be co-sponsoring this camp again in 2016, and we are hoping to help even more families will attend.
We are developing literature to help young adults with CRPS. We are designing a brochure to help people with CRPS continue their education by helping colleges understand what accommodations will ensure success. We also are designing a brochure to help young adults with CRPS enter and succeed in the workforce.
Research And Personal Aid
RSDSA has launched an International Research Consortium (IRC) to encourage much more CRPS research, and 40 established laboratories are involved. The treatments of today must not be those of tomorrow.
In conjunction with the Jenkins Family, RSDSA has established an emergency assistance fund to aid individuals and families financially devastated by CRPS.
In less than three years, RSDSA has provided over $40,000 in emergency financial grants (usually a grant of $500). We have provided money for emergency fuel assistance, to stop evictions, for travel and lodging to see out-of-state CRPS specialists, for security deposits, for medicine and insurance co-pays—the list is endless.