Seeking to ease their pain
New law targets debilitating illness
TRENTON — In the future, perhaps people like Judy Hopkins of Ocean Township will not have to suffer from a mysterious disease that leaves patients feeling pain from injuries or surgical procedures that healed a long time ago.
Gov. Corzine Monday signed legislation that will give reflex sympathetic dystrophy (RSD) syndrome, also known as complex regional pain syndrome, a higher profile in the medical community of New Jersey.
Hopkins and her mother, Linda, were present at the Statehouse when Corzine signed a bill co-sponsored by retiring Sen. Joseph A. Palaia, R-Monmouth, and outgoing Assemblyman Michael J. Panter Jr., D-Monmouth, that will allow the state Department of Health and Senior Services to create an educational program about the disease.
After having exhausted all treatment options in the United States, Judy Hopkins traveled to Germany in October for an experimental procedure so dangerous that the U.S. Food and Drug Administration does not allow it.
Judy Hopkins was put into a medically induced coma, called a ketamine coma, for five to seven days and administered up to 900 milligrams of ketamine, used as an anesthetic for humans and a tranquilizer for animals. The dosages were enough to kill her, cause brain damage, put her condition into remission or do nothing at all.
While Hopkins is traveling to Boston this week for brain scans to assess her prognosis, her family described her recovery as nothing short of miraculous and said she has been socializing with friends and planning her future since returning home, according to her mother.
In about 180 days, the state Health Department will set up a special page on the agency’s Web site with information about RSD symptoms and treatment in an effort to better educate health care providers about the condition, which affects between 200,000 and 1.2 million Americans.
No one knows how many people in New Jersey are afflicted, and that’s part of the problem, said Bruce Shapiro, an aide to Panter.
“Personally, there have been times where we’ve been in a hospital with my father and the emergency room doctors had no idea what they were looking at,” Shapiro said, who has his own share of personal stories as to how the disease has affected his family.
RSD was first identified in Civil War veterans. A neurologist in Philadelphia, Silas Weir Mitchell, treated Union soldiers who were complaining of stabbing pains from injuries that had healed. He named the disease causalgia.
In RSD cases, nerves misfire, sending constant pain signals to the brain even after the cause of the pain has passed. The disease can develop in response to an event the body regards as traumatic, such as an accident or a medical procedure.
At the beginning of the 21st century, the condition remains difficult to identify. Hopkins suffered with RSD for four years and saw multiple doctors before she was correctly diagnosed by a neurologist in August 2002.