LEBANON, Pa. (AP) _ Imagine having the worst case of sunburn in your life, then imagine taking sandpaper and scratching it all over your sensitive skin. And never stopping.
That's the masochistic analogy Dr. Robert Knobler used to convey to Amanda Ebersole's mother the depth of pain her daughter experiences everyday.
"It was like a hammer that day hitting me over the head," said Kathy Ebersole. "I could finally understand it."
Amanda couldn't put her pain into words for her mother, but Knobler could; he suffers from a milder case of the same disease himself. It's called Reflex Sympathetic Dystrophy Syndrome (RSDS) and it may be the most debilitating disease you've never heard of.
It can begin with the simplest of injuries, a cut or a bruise, but through mechanisms the medical world doesn't understand, the pain messages sent by the brain's sympathetic nervous system don't stop, causing tissues around the original injury to swell continuously.
Eventually it's the nerve signals from the brain that cause the damage, inflicting excruciating, burning pain and numerous other hideous symptoms. Left untreated, the insidious disease can spread to other areas of the body yielding even more harm and eventually crippling the patient.
The possibility that the 18-year-old suffered from the disease had been mentioned by a Hershey orthopedists in 1997, but it wasn't until an Internet "pain pal" she converses with on-line suggested she see Knobler that Ebersole was officially diagnosed with the neurological disorder, which afflicts 6 million Americans. Although Knobler's diagnosis did not relieve Ebersole's pain, she believes it did vindicate her in the eyes of those who doubted her, like local doctor, her friends and some teachers at Cedar Crest High School.
"I wouldn't wish this disease on my worst enemy," Ebersole said, gingerly adjusting her body in a reclining chair. "I'd just like them to live an hour in my shoes, just so they'd know. Nobody knows what it's like until they are in our shoes.
"All those people who doubted me _ and now I have the proof of it. I just want to tell them off."
"After a while you begin to get used to (the pain)," she explained. "It's only when something new crops up that you begin to have the bad spells. You get used to it because it's part of my life."
Ebersole's bout with RSDS began innocently enough in 1994 when she was in eighth grade. She severely sprained her ankle running relay races in gym class, rolling her ankle inward and crashing down on it. X-rays proved negative, and after staying off the ankle for a few weeks it seemed to heal.
The incident weakened the muscles and tendons surrounding the ankle, and about a year later Ebersole again sprained it. This time she was just walking. And this time something strange happened; the ankle and foot turned shades of purple, blue, and red, and then became very pale, Ebersole recalled.
"It was like the horse in the wizard of Oz," she joked.
The pain grew worse. Eventually the skin over the foot settled into a bluish purple color that was cold to the touch. Seeking answers, the Ebersoles sought lots of medical opinions, but all the doctors were at a loss to explain the perpetual discoloration.
In December of 1997, more than two years after the second sprain, they went to the Pennsylvania Institute of Orthopedics, where Ebersole was examined by Dr. Richard Hallock. By a stroke of luck, Hallock had recently read an article detailing the symptoms of RSDS. When he took a look at Ebersole's cold, purple foot he was convinced that she was suffering from it.
Hallock referred Ebersole to the Pain and Palliative Clinic at Hershey Medical Center. Although she was treated at the clinic for a year, Ebersole claims that doctor's never entirely embraced the RSDS diagnosis and doubted the severity of her symptoms, eventually even sending her to a psychologist for help.
"Once I started doing research on RSDS I could basically out smart them," Ebersole said. "I knew what (the problem) was. I was sick of their questioning me."
Ebersole said one doctor who took care of her for a viral infection in HMC's pediatric ward diagnosed her with chronic fatigue syndrome and suggested to her mother that Amanda was mentally willing the foot to be purple.
Shortly thereafter, Ebersole learned about Knobler and made an appointment. Ebersole and her mother are both angry at all the time wasted with unknowing local doctors. They feel that if the disease had been diagnosed even a year earlier, Amanda would be in better condition.
"I am really angry and I wish I could let go of the anger, but I can't," said Kathy Ebersole from her family's North Lebanon Township home. "If they would have just believed her and sent her to someone who could have diagnosed her. Now she won't get any better."
Today the disease has spread throughout Amanda's body, weakening muscles everywhere, including her bladder, which must be catheterized to flush out all fluids. Even her teeth have suffered; her mouth is full of cavities because of the toll taken by the complicated disease and also by the side effects of the medications that cause dry mouth.
The Ebersoles' hope that Amanda reaches a plateau in her disease where the pain can be better managed. They are impatiently waiting for their insurance company to approve a morphine pump implant that would administer 1 milligram of the narcotic directly into the spinal fluid for instant pain relief, sparing her from the side effects from 300 mg dose she now takes orally.
That medication is just one of dozens pills, which have cost the family thousands of dollars, that she takes daily to relieve pain, reduce swelling, and relax her muscles. The financial burden is not the only price the Ebersole's have paid.
Kathy Ebersole confessed that dealing with her daughter's disease nearly broke up her marriage to husband Ken. They've gotten through that crisis, she said, but the disease continues to complicate their lives.
Although Amanda's life is far from normal, she continues to do some things that others her age do, including occasional trips to the mall. She also continues to work towards her high school diploma, but the disease prevents her from attending school. She is tutored at home.
To keep her mind off the pain, Ebersole spends lots of time in her room on the Internet, mostly late at night, when she has difficulty sleeping. She chats online with others who have RSDS and can relate to the daily struggle.
"The only people that can truly understand me are the people who have RSDS," Ebersole said, adjusting her T-shirt which bears the RSDS logo of a person surrounded by flames. It was the recent death of just such a special friend whom she met at a 1998 RSDS conference that prompted Ebersole to come forward to tell her story.
The anguish of the loss added an emotional pain to Amanda's physical suffering, and she admits to contemplating suicide _ a not uncommon result for victims of RSDS, she said.
Michael Hunter was the co-director of an RSDS support group that organized the conference. Despite the difference in their ages _ he was 42 at the time _ they struck up a quick and close friendship conversing by phone several times a day.
One day, several months ago, Hunter did not call as expected. After several attempts to contact him, Amanda learned from his ex-wife that he had died hours after the last time they had spoken. Hunter had a weak heart, but because he suffered from RSDS doctors were reluctant to operate on him. He died of a heart attack, Ebersole said.
Ebersole is organizing a local RSDS support group, and she hopes exposure will alert others about the risks of the disease. She also hopes that public awareness will increase funding for research to find its cure.
"I have two choices," Amanda said. "Let this disease destroy my life, or live life to the fullest."
