Painful nerve condition can affect entire family
By PAMELA SROKA-HOLZMANN
HILLSBOROUGH -- Living with Reflex Sympathetic Dystrophy Syndrome can be a new experience not just for the person diagnosed but for families who also adapt to the disorder's conditions.
Stephen Brilliant, who was diagnosed in 1997, and his wife, Antoinette, said a major challenge was deciding whether to have more children -- at the time of the diagnosis, they had one daughter. They went on to expand their family with two more children: Nathaniel, now 11, and Jacqueline, 7, but gave up their dreams to try for a fourth child, Antoinette Brilliant said.
The couple's youngest children have learned they can't "play rough" with their father or rub against him the wrong way because they could hurt him. Their older daughter, Anna, 13, is old enough to recall when her father wasn't in as much pain as he is now.
"All family members live with it, not just the person in pain," Antoinette Brilliant said.
When the couple vacationed at Walt Disney World in 2001 and in 2005, Brilliant missed out on roller-coaster rides and other experiences he once enjoyed.
"If it is 80 degrees during the day and drops to 60 degrees overnight, his foot will start throbbing immensely," Anna said.
When describing a recent snowstorm, Anna said, "When we all woke to the beautiful snow, my dad had already been in pain due to the pending weather change. I swear my dad can predict the weather!"
While RSDS is not genetic, the family also had a scare when Anna was a fourth-grader about four years ago and began to develop similar painful symptoms when she sprained her ankle during a physical fitness test in gym class. Once Anna thought the ankle healed, she resumed her usual activities of ice skating and other sports.
"I ran around at recess and played softball. This unfortunately made my ankle worse," Anna said. "So I went to three more doctors in New Jersey and New York. They all said that I had nerve damage, but it might be something more. I had to stop skating. I couldn't participate in gym the whole third marking period and wasn't allowed to run around anymore."
Anna then saw Dr. Alyssa Lebel, an anesthesiologist and neurologist at the Boston Children's Hospital in Massachusetts, who confirmed the youngster only had peripheral nerve damage and not RSDS. Anna then had physical therapy three times a week for about 18 weeks. Then, for about another year, she had physical therapy once a week. Today, she can enjoy physical activities again but knows her father isn't as fortunate.
In helping other families cope with these and other changes, the family attends group support sessions monthly at Somerset Medical Center in Somerville. The sessions, "Living With RSDS," help the family share experiences with others who have been diagnosed with the disorder. About 50 members throughout Central Jersey attend the support sessions.
In the fall, the group took its efforts a step further and planted about 200 flower bulbs in pots, then sold the plants to various Central Jersey medical offices to raise awareness about RSDS. The group raised about $2,000 im various fundraising efforts to help other families with the disorder get the services they need.
"I am living with RSDS, even though I don't have it," Antoinette Brilliant said. "I've been through everything with my husband. It gave us a different perspective on what's important in life."
Brilliant said that for those who think they might have RSDS, early diagnosis is critical. His advice to those who have been diagnosed: "Don't give up and keep going. That's very important because I can see the difference with people with positive attitudes and those who don't have positive attitudes."