Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, is a rare, incurable disorder that causes the brain to send pain signals to the body, even when there is no detectable reason for the pain. This condition causes many sufferers to have ongoing, bone-crushing and burning pain that is hard to adequately describe and often difficult to diagnose.

But the families of CRPS/RSD patients, who often function as caregivers, also suffer from an intense and chronic emotional pain that worsens as their loved one’s symptoms escalate.

A Patient’s Struggle is a Family’s Struggle

Justin Brown, a 34-year-old CRPS/RSD patient from Fort Washington, Pennsylvania, lives with his parents Rick and Joan Brown, his full-time caregivers. Justin developed CRPS/RSD after surgery, which is a known complication of any type of surgery. Although Justin takes powerful narcotics multiple times per day, he continues to endure agonizing pain that has rendered him bedridden for the last 10 years.

But Justin does not struggle alone. His family, Joan, Rick, and his brother Chris, watch him suffer and feel powerless to help him. The family also struggles financially, having spent roughly $600,000 on doctor visits, operations, and a trip to Mexico for experimental treatment in search of pain relief for Justin.

Another article about CRPS/RSD looks at the lives of three women affected by the condition – two of whom live with it, and one of whom had a son consumed by the pain. Andrea Jenkins’s son Brad was seriously injured in a motorcycle accident in Maryland in 2007. After multiple surgeries, he was still not healing, instead experiencing persistent pain in his leg that was more intense than it should have been, based upon his injury. After the pain spread to his entire leg and left him unable to work and dependent on pain medication, Brad was eventually diagnosed with CRPS/RSD. He died in 2011 of an accidental drug overdose.

Fortunately, Andrea was able to refocus her caretaker role into that of creating a Patient Assistance Fund in honor of her son through the RSD Association. To date, the fund has provided more than $22,000 to help 55 CRPS/RSD patients and their families pay for their day-to-day needs, including doctor bills, medical equipment, and even rent. “This is my calling,” she said, “and I want to give back and know that Brad’s death wasn’t for nothing.”