First responders who worked on the dusty, smoldering pile of debris in the aftermath of the Twin Towers’ collapse 15 years ago have begun showing signs of debilitating nerve damage, a team of Long Island doctors has found for the first time.
The research, led by Dr. Marc Wilkenfeld at Winthrop-University Hospital in Mineola, is the third of his investigations to link World Trade Center dust to nerve damage, but it is the first beyond his statistical studies to confirm it in a small group of patients.
He plans to elaborate on his findings — published in the Journal of Occupational and Environmental Medicine — during a news conference Tuesday at the hospital.
Wilkenfeld said the condition is known as peripheral neuropathy, which is characterized by burning pain in the legs and feet, leg and foot numbness, tingling sensations, and pain and unsteadiness while walking. For some people the condition is so debilitating that they have trouble going about daily routines.
“We found that 56 percent of our patients had neuropathy documented by electromyography with no other cause,” said Wilkenfeld, chief of Winthrop’s division of occupational and environmental medicine. Electromyography, or EMG, measures electrical activity when nerves in the muscles are stimulated. The test is key in the diagnosis of neuromuscular problems. His research involved only 16 people.
But Dr. Jacqueline Moline, director of the Queens World Trade Center Health Program in Rego Park, a division of the Northwell Health system, applauded the Winthrop findings and said neuropathy has been emerging among patients in her program as well. Moline was not part of the Winthrop research.
“There were 150 different compounds and we don’t know how they interacted,” she said, noting that it is reasonable to suspect neuropathy as a condition that has taken years to manifest.
“I think we have to be open-minded about what might have happened in the aftermath,” Moline said.
Richard Garcia, 57, a retired FDNY lieutenant, said his neuropathy came about gradually but the pain is now so intense and weakness so pronounced in one leg that he sometimes has difficulty walking.
Garcia said he is on medication to address the neuropathy, but the pain often keeps him awake at night.
“During the daytime you can stay busy — but when you’re laying down trying to fall asleep, that’s when it hurts the most,” he said.
“There was a finite number of people down there,” said Garcia, who retired in 2013 after 23 years as a firefighter, but there seems a growing number of medical conditions afflicting the people he calls American heroes.
“Eventually, we all will die of something. I just want to be taken care of,” he said, referring to his disorder. “I really don’t want this to happen to other people. If they can just do the research, they may be able to prevent it in others.”
Wilkenfeld underscored Monday that neuropathy is not covered by the federal Zadroga 9/11 Health and Compensation Act, which means patients have to find other ways to pay for treatment.
The doctor said he was able to rule out other leading causes of neuropathy, such as Lyme disease, diabetes and vitamin B-12 deficiency, in these patients.
He added that the former first responders seen at Winthrop are likely representative of thousands of others who may have attributed their pain and disability to aging and other causes. The responders treated at Winthrop range in age from 48 to 71.
Wilkenfeld said his research provides objective evidence that the dust and debris in lower Manhattan were especially damaging to nerves, and that first responders were likely exposed by inhaling particulates, handling debris with their bare hands and walking through the pulverized poisons in improper shoes.
“The health of 9/11 responders is an ongoing story,” Wilkenfeld said. “That toxic brew had effects on all aspects of health.
“Part of this,” he said of his research, “is getting people the care they deserve and the other part of it is the science.”