Throughout the 30 years I have been representing patients with CRPS/RSD, I have come to appreciate how helpful and comforting a support group is for these folks. Each has his or her own unique experience and methods of coping with the heinous condition.
Two women devastated by Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome (RSD/CRPS) found each other in a Twitter group and started to build something big: the “RSD/CRPS Doesn’t Own Me” website.
Gracie Gean Bagosy-Young, a journalist who writes extensively on RSD/CRPS for the National Pain Report, says of the website, “The RSD/CRPS Doesn’t Own Me website is an excellent place to find information on the disease, locate a support group, or network and chat with other warriors.”
The women, Christa Whightsel and Flora Langel Decock, both suffer from RSD/CRPS. After sustaining a minor foot injury at work that turned into something so painful that she could no longer stand, Whightsel was diagnosed with the condition seven months later. She was bedridden for eight months, where her only interactions were with her family and her computer.
Twitter Got Whightsel Going Again
While on Twitter, she found a group and began making connections, which is where she met Langel Decock. The two started a support group on Facebook and found 120 people in the first week. Their Facebook page has now amassed nearly 12,000 followers in 36 countries, and has become the go-to place for people wanting to learn more about RSD/CRPS. Whightsel and Langel Decock are now forming a 501c-3 organization that will support patient awareness and education.
November was CRPS Awareness Month
RSD/CRPS is a chronic pain condition that results significant trauma, such as motor vehicle accidents, injuries, and falls. It is most likely to affect individuals between the ages of 40 and 60, although children and the elderly may develop it as well. Traumatic injuries to nerves, bones, joints, muscles, tendons, or ligaments can trigger RSD, as well as various health conditions. Like fibromyalgia, RSD/CRPS is more likely to occur in women.