Support group helps girl deal with painful condition
Lacey Berardi was 10 years old when the pain began in her back. Within days she was bedridden and could not stand to be touched or eat because of the pain.
Her frantic family began a journey to find her help.
Little did they know that three years later, they would still be battling public ignorance and a lack of medical knowledge about her condition.
The Johnstown native was a typical girl, active in school and cheerleading, her mother Vicki Walker said.
But as her pain increased, doctors could do little more than prescribe high doses of Ibuprofen and question whether there was a psychological component to her symptoms.
It took a visit to Childrens Hospital of Pittsburgh to find out Berardi had reflex sympathetic dystrophy (RSD), which is commonly called complex regional pain syndrome.
“Physicians are not in tune with RSD,” said Walker. “That’s a huge problem.”
Conventional testing does not work with RSD. Blood tests, CT scans and MRIs will not reveal the problem, said Lori Murphy, a physical therapy clinician and research associate at the John P. Murtha Neuroscience Institute.
“Sometimes there’s nothing on the outside to say that they have RSD,” she said. Taking a thorough medical history and having a familiarity with the syndrome are the keys to diagnosing, she said.
“The more we can do to educate the public and health care providers, the better off we are,” Murphy said.
Diagnosing the problem was only the first step in a long road back for the girl, who got much worse before she began the treatments that would eventually restore her quality of life.
The syndrome, which affects up to 1.5 million people in the United States, became so bad that Berardi couldn’t even bathe, her mother said.
“The feel of water on her back was torture,” Walker said.
The medical community has few answers to what causes the syndrome or how to effectively treat it, said Murphy.
Scientists believe RSD can occur after physical trauma, repetitive movement and can strike almost anyone at any age, she said.
“Still, some folks have no idea what brought it on,” she said.
The symptoms can start with burning pain, inflammation, sensitivity to touch and skin discoloration, she said.
Unchecked, the pain can worsen and often creates intense emotional problems for sufferers, she said.
Currently doctors treat the affliction with physical therapy and pharmaceuticals that effectively reboot the overly sensitive sympathetic nerves creating the sensation of constant pain, Murphy said.
For Berardi, it took months of painful treatment to break the pain cycle, Walker said.
Morphine and methadone, some of the strongest pain-mitigating opiates used in medicine, did little for Berardi.
In fact, it took courses of nerve-blocking and aggressive physical therapy to break the cycle, Walker said.
Now, the cheerleader is in remission and has resumed the normal life of a 13-year-old. Freedom from pain does not mean freedom from worry, however.
“We know that it can come back at any time,” Walker said.
That’s one of the main reasons a local support group for RSD sufferers was formed in April, Walker said.
“There is no cure. You have to learn how to manage,” she said. “We have to be advocates for ourselves.”
Many of those with RSD never stop taking drugs or receiving treatment for the pain. Spending time on Web sites like www.RSDhope.org, shows the stories of many who seek just days of relief as opposed to complete remission.
Since 1997, the site has been visited more than 10 million times, according to their estimates.
Patients and families can use the site to meet others with RSD, learn treatments, contribute to research and find local support groups like the one in Johnstown.
The Johnstown group, which meets the second Monday of each month in the institute, has around 20 members, Walker said.
The goal is to bring those with RSD and their families together to learn about the latest research, treatments and educational efforts.
“There’s not enough education. So many people are misdiagnosed,” Walker said.
“We’re like a big secret. If we can just increase awareness, we can help many, many more people,” she said.
For more information on the support group, please call (814) 269-5238.