Man’s chronic pain disorder drives awareness campaign
By PAMELA SROKA-HOLZMANN
HILLSBOROUGH — When Stephen Brilliant was injured in a car accident nearly 13 years ago, the Hillsborough man had no inkling it would affect the rest of his life.
As a result of the accident, the 42-year-old Brilliant said he suffers from Reflex Sympathetic Dystrophy Syndrome, also known as RSDS or Complex Regional Pain Syndrome, which is categorized as a malfunction in part of the nervous system. The disorder brings on chronic pain symptoms characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans.
Brilliant and his family are trying to raise more awareness about the disorder after a trip to meet with the state Senate Budget and Appropriations Committee on Dec. 1 in Trenton.
There, his daughter, Anna, 13, an eighth-grader at Hillsborough Middle School, provided testimony about the disorder and asked about 10 senators for their support in passing an educational awareness bill about RSDS.
On Dec. 17, that bill, the Reflex Sympathetic Dystrophy Syndrome (RSDS) Education and Research Program Act, was approved in a 38-0 vote by the state Senate. It was approved by the Assembly in June. The bill is sponsored in the Senate by Sen. Joseph Palaia and in the Assembly by Assemblyman Mike Panter, Assemblyman Eric Munoz, and Assemblyman Neil Cohen. Next, the bill will go before Gov. Jon S. Corzine.
Brilliant has lived with the chronic condition since the December 1995 car accident, and he said each day brings new and unexpected challenges. Symptoms can include persistent moderate to severe pain, swelling, abnormal skin-color changes, skin temperature, sweating, limited range of movement and movement disorders.
Brilliant said a simple bed linen over his foot can bring excruciating pain. When Brilliant — once an athlete — stepped on a thumbtack, he screamed for 10 minutes straight.
Despite the symptoms, Brilliant continues his full-time job as an accountant with his own business, attempts the grocery shopping list and attends day trips with his wife and three children. However, longer trips such as vacationing or holiday shopping through a mall require Brilliant to use an electric scooter to get around.
“It’s challenging, some days. I really wonder how I do it,” Brilliant said. “I’m a family man; I’m a father. I have to do it at times. And there are days I don’t want to get out of bed.”
How it happened
According to the national Reflex Sympathetic Dystrophy Syndrome Association, minor injuries — such as a sprain or a fall — are frequent causes of the disorder. One characteristic of RSDS is pain that is more severe than expected for the type of injury that occurred.
For Brilliant, it was a slow process learning what caused the pain in his foot, but all arrows pointed to the car accident in 1995.
He recalls the incident as if it happened that day. He was traveling along Interstate 78 westbound with his wife, Antoinette, seated beside him in the passenger seat and Anna, then an infant, strapped in her car seat in the back.
Another vehicle traveling eastbound cut off his vehicle, lost control for an unknown reason, bounced off the barrier into the eastbound lane, came across the express lane into the local lane and slammed into Brilliant’s car on the driver’s side, he recalls. But the worst was not over.
The vehicle that hit Brilliant proceeded to spin around and strike his car a second time on the driver’s side, he said. While glass shattered throughout the car, fortunately Antoinette and baby Anna didn’t suffer much more than a scratch.
“Stephen took the direct impact. He ended up with injury in his foot, shoulder and had glass in his eye,” Antoinette Brilliant recalled. “He took the majority of the impact.”
Following the crash, Brilliant began to feel more chronic pain in his foot. He described the feelings as a “stabbing pain,” with “extreme hot and cold sensitivity,” and often tinging sensations and swelling in the area.
“It was like shooting pains all the time,” he said.
Following several treatments — including a surgery that cut around a “crushed nerve” and put his foot in a cast — Brilliant realized something was not right. He immediately was in a lot more pain than most people would be following a surgery.
“The day I came out of the surgery, I said ‘something is wrong,’ ” Brilliant said. “I thought, ‘my foot hurts 10 times worse than before the surgery.’ My foot hurt and you couldn’t even put a sheet on it.”
Brilliant said it became a task just having to convince friends and extended family members that he wasn’t “overreacting” and the pain was real. In 1997, a physician at Westfield Orthopedic finally diagnosed him with RSDS.
“It’s amazing because even though I have this tremendous disorder, I look very fine and normal,” he said. “But if someone kicks me or steps on my foot or I step on a little pin, it’ll send me through the roof. It’s not something you can see, but there’s a problem there. You look at the book by its cover, and you’re not looking inside; it’s hard to look inside.”
Following the diagnosis, it took Brilliant a year to learn how to walk again as a result of having no movement in his foot.
Today, the severe pain in his foot still exists, and doctors say it will never cease because there is no cure for RSDS.
Anna told state representatives during her meeting that she wanted her Christmas wish to come true.
“I want you to know that every Christmas I only have one wish,” she said. “This is for my dad to get better and be in less pain. I know you can’t cure RSDS, but you can provide education to doctors who can find a cure. Please at least give me and other RSDS sufferers the gift of hope.”
Anna also recalled in her speech being a “hyper” child and always wanting her father to play outdoor sports and games with her. She said, “I was always running around or playing catch or practicing hitting for softball. My dad always tried to help me, but his help was limited. He couldn’t — and still can’t to this very day — squat, run, jog or put little to any pressure on his left ankle.”
She added, “By being unable to do these things, he was unable to help me as much as he would have liked.”
The bill establishes a reflex sympathetic dystrophy syndrome education and research program at the state Department of Health and Senior Services. The purpose of the program is to promote public awareness of the causes of RSDS, the value of early detection and the diagnosis of and possible treatments for the syndrome, and to promote research, through public and private sources, to accurately identify, diagnose and treat the syndrome, according to the bill.
The bill also will educate first responders about the disease so they learn the proper way to take an RSDS patient’s blood pressure and other techniques to minimize the pain of someone suffering from the disorder.
“I believe the bill can really be helpful because of what it can do to help individuals,” Brilliant said.
Under the provisions of the bill, the state Department of Health and Senior Services would:
“One of the main reasons that approval of this legislation is so important is because RSDS is commonly undiagnosed or misdiagnosed,” said Bruce Shapiro, Assemblyman Panter’s chief of staff. “For many patients, they may go months or years without being properly diagnosed because there is no single test such as a blood test that can be performed to diagnose RSDS. Despite the fact that RSDS has been around since the Civil War, many people still have never heard of this disease.”
Shapiro said he also became involved with the legislation as a result of his father being diagnosed with RSDS following a car accident in 2002.
“However, since then, I have met and spoke with so many people, both in New Jersey and around the country and the world for that matter, who have RSDS that getting approval of this bill is as much for all of them as it is for my father now,” Shapiro said.
Brilliant said he is “moved” by the support of state legislators, as well as the first time he read his daughter’s speech.
“I started to cry when I heard her read the first draft, Brilliant said. “It really hit home.”
Pamela Sroka-Holzmann can be reached at (908) 707-3155 or firstname.lastname@example.org.
At a glance:
Reflex Sympathetic Dystrophy Syndrome (RSDS) or Complex Regional Pain Syndrome (CRPS) is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome might follow 5 percent of all injuries. The condition can be mild or severe. It affects between 200,000 and 1.2 million Americans.
For more information, visit the Reflex Sympathetic Dystrophy Syndrome’s Web site at http://www.rsds.org.
For more information about the Reflex Sympathetic Dystrophy Syndrome (RSDS) Education and Research Program Act, visit http://www.njleg.state.nj.us/2006/Bills/A4500/4208_I1.PDF.