The pain is excruciating. It does not cease.
Treatments can temporarily provide relief, but the brain remembers.
There is no cure.
Reflex Sympathetic Dystrophy Syndrome (RSD) also known as Complex Regional Pain Syndrome (CRPS) can originate from something as simple as dropping a bottle of shampoo on your foot in the shower.
One Cherry Hill business owner learned about the illness, which has affected people for several hundred years, after it struck her family.
When Betty Maul’s daughter, Elizabeth, was a sophomore at Cherokee High School, she was a nationally ranked field hockey player.
Elizabeth suffered stress fractures in both of her legs. One leg got better; the other did not.
In three months’ time, explained Maul, her daughter went from being an athlete who could run eight miles in a day to a girl who could not walk up stairs.
Her foot atrophied and nothing could touch her leg without causing severe pain.
Not even a breeze streaming through a window.
A flurry of visits with doctors ensued in the coming months.
“We saw all the top docs in the area,” Maul said.
Finally, a physician’s assistant mentioned RSD as a probable condition.
Doctors wanted to do a deep tissue biopsy, but her dermatologist refused.
He, too, felt very strongly that Elizabeth was suffering from RSD.
That’s when Maul began researching the condition.
“It’s a high level of pain, much like you would have with a terminal illness,” she said.
Maul took her daughter to Children’s Hospital in Boston, filled out a plethora of forms and saw 15 doctors there.
Elizabeth was placed in physical therapy and given an epidural block that was seven times stronger than would be administered to a woman in labor.
Just to take the edge off the pain.
Doctors were able to help Elizabeth move her foot again, but warned her that the pain would come back at the end of 10 days.
She had to keep moving her foot and pushing her life forward.
Now, Elizabeth is a 29-year-old Somerdale resident expecting a child.
“In the story of RSD, she’s doing very well,” Maul said.
Any sort of trauma can cause RSD.
“It’s a misfiring of the brain,” she said. “It can ruin your life.”
Millions are affected by the condition and there is a high incidence of suicide associated with it.
“It makes you live in severe, burning pain 24–7,” she said. “It never stops.”
Sufferers can’t sleep. They lose their money, their marriages, their jobs.
And many go undiagnosed.
“You want to jump on it early,” Maul said, to interfere with the signal.
Visibly, suffers appear to be healthy.
“They look fine, but they’re not fine,” she said. “It’s terrible.”
Sometimes, the condition can spread from the affected limb to other areas of the body.
The biggest challenge surrounding RSD is getting the word out.
Treatments are available to help ease the pain, but success rates vary dependent on how the individual’s body reacts, she said.
Maul has been a part of the Reflex Sympathetic Dystrophy Syndrome Association for more than a decade, searching for ways to help those afflicted.
“We’re really working on trying to help people manage their lives with this illness,” she said.
In her office at FrontEnd Graphics, Inc., her colleagues are involved in efforts.
“Everybody in my office donates their time,” she said, and the printing company does pro bono work for the association. “It’s not about business and personal gain. It’s about doing something for other people that really matters.”
It’s impossible to be untouched by the condition after seeing the effects, she said.
Maul has raised more than $1 million during her time in the association.
Currently, a 20-year study is being performed to see the progression of the disease.
But right now, she said, “There’s no magic bullet with this one.”
Elizabeth, who seems to be in remission during her pregnancy, is extremely careful in how she treats her body.
“She has really addressed the whole body,” said Maul, from eating healthy to staying in a good physical condition.
There are a number of ways to help, she said.
Reach out to someone who may have the illness, be in contact with personal physicians to raise awareness, visit the association’s website and sign up for the newsletter or send in a check with designation of where the monies should go, whether to research or to help someone in financial distress.
There will be an event hosted by Jersey Business Leaders at Pinsetters Bar & Bowl, 7111 Maple Ave., Merchantville, on Sunday, Oct. 21 from 1 p.m. to 4 p.m. to benefit the association.
“It’s an Eagles bye week so there’s no excuse to not come out and bowl,” said Maul. “We’re going to do our part down here in South Jersey.”
During her lifetime, Maul said, she would like to see some effective treatment protocols enacted to improve the quality of life of sufferers.
“It is just a disease that shatters you,” she said.
Learn more about RSDSA
Visit www.rsds.org for more information on the Reflex Sympathetic Dystrophy Syndrome Association. Symptoms of the condition include severe burning pain, tissue swelling and extreme sensitivity to touch. Women are generally affected more than men. The association was founded in 1984 to promote awareness, according to their website.
