When a doctor examines a survivor of the Sept. 11 attacks, she’s likely to ask a certain set of questions. She’s look­ing for the telltale afflictions triggered by the toxic dust of the World Trade Center.

Lung disease, stomach com­plaints, sinus problems and post-traumatic stress syndrome are common, particularly among first-responders who spent weeks downtown after 9/11.

But a few years ago Marc Wilkenfeld, the chief of occupational and environmental medicine at Winthrop University Hospital in Mineola, began observing another set of symptoms.

‘Heard the Same Stories’

Dr. Wilkenfeld has treated hundreds of World Trade Center patients, and continues to see about 20 a week. He became alarmed when many began reporting a “terrible numbness” in their hands and feet. Their extremities would tingle or cause them pain. Something was clearly affecting their nerves.

“It’s amazing how you start to hear the same stories,” Dr. Wilkenfeld said in an interview last week. More than one patient’s hand went so numb that he dropped a coffee cup.

Dr. Wilkenfeld worked with Mark Stecker, the hospital’s chair of neuroscience, who had done previous studies testing how the nerves of rats reacted to various substances. The two obtained some dust from the Trade Center and gave it the same treatment. The results supported what they were seeing in their patients: the rats’ nerves were damaged.

On Jan. 15, Drs. Wilkenfeld and Stecker announced they’d found further evidence that this type of nerve damage was a problem for Sept. 11 survivors. They surveyed 255 people, half of whom had been exposed to the Trade Center dust.

Those patients were 15 times more likely to have severe symptoms of neuropathy than the unexposed people.

‘Your Feet Feel Dead’

“It’s numbness; it’s tingling; your feet feel like they’re dead. I have it all the way up to my calf in both legs,” said John Coughlin. “I can’t stand for any length of time.”

A retired Police Officer, assigned to the Emergency Services Unit, Mr. Coughlin work­ed in recovery after the attacks. At 57, he is managing a litany of illnesses, from heart disease and diminished lung capacity to sinusitis, chronic acid reflux, sleep apnea, stomach problems and PTSD. He recently had open-heart bypass surgery.

The numbness and ting­ling in his feet began years ago. Now he’s starting to get it in his fingers.

With his neuropathy, Mr. Coughlin must be extremely careful when he walks. With little feeling in his feet, he could stub a toe or step on something sharp and not realize it. Because the nerves are damaged, wounds can be slow to heal.

‘Can’t Walk Barefoot’

“I can’t walk barefoot,” he said. “I’m always afraid that I’ll trip or something—forget about it.”

The most recent Winthrop study provides further evidence that it is Sept. 11 dust that triggers symptoms like Mr. Coughlin’s.

Those who were most exposed to the dust reported the strongest symptoms. And the correlation was marked. Diabetics are long known to have higher rates of neuropathy, but in the Winthrop study, World Trade Center patients had much higher rates than a population of Type 1 diabetics.

The authors suggested that the nerve damage could have occurred when the patients breathed in the dust. But they also could have been exposed through the skin, while digging through piles of rubble or tramping through the toxic sludge that lay about the wreckage.

Mr. Coughlin retired in 2002, and didn’t begin getting sick until later. As a result, he retired with an ordinary police pension, rather than a disability pension, which would have delivered 75 percent of his final average salary, tax-free. Unable to work, he also collects a Social Security disability pension.

Financially Squeezed

But his monthly income takes a hit from child support, the result of a divorce that Mr. Coughlin said was influenced by his PTSD. And the medical costs for his heart and nerve disease are adding up.

That’s because neither ailment is covered under the Zadroga Act. Though Mr. Coughlin has decent insurance as an NYPD retiree, his co-pays for neuropathy treatment are a burden. He must see a podiatrist every couple of months, and has regular electrical conduction tests. He also takes monthly medication for the condition.

“I have medical bills outstanding in the thousands right now that I have to keep putting off because I can’t afford to pay it,” he said. The retired officer’s other ailments are eligible for free medical care under the Zadroga Act, which also compensates victims for out-of-pocket costs. It was recently renewed for 75 years.

Neuropathy is being considered for Zadroga coverage, but scientists must conduct a formal peer review before any new illness is added. Dr. Wilkenfeld believes neuropathy should be covered. The Federal program included cancer for the first time in 2012, after a long battle by advocates. At first, government officials said there wasn’t enough evidence to prove the link, but studies similar to the Winthrop one helped tip the scales.

‘A Horrible Disease’

Dr. Wilkenfeld hopes that his peers begin to check for signs of neuropathy when they treat 9/11 responders and survivors. The condition has no cure, he said, and is progressive in most cases—that is, it gets worse over time.

“It’s a very disabling and painful disease,” he said. “When you hear people describe it, it’s horrible.”

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(2) comments

jmcauley

I was an FDNY first responder to the World Trade Center on 9/11/01. I worked there for 4 months total. I have had peripheral neuropathy for over 14 years now. It developed first in late September 2001 at the same time as I developed numerous respiratory infections, the world trade center cough, asthma, RADS etc. It developed first in my feet and has kept spreading since past my knees and now in my hands and arms. I was officially diagnosed in 2003 with peripheral neuropathy.

I have met many first repsonders in the last 14 years who tell me that they too have symptoms of nerve damage but havent made the connection yet to their World Trade Center exposures. At the World Trade Center, first responders were exposed to literally hundreds of neuro toxins. It should not be surprising that nerve damage resulted.

Since 2004, I have been trying to get the FDNY interested in asking the question of 9/11 first reponders do you have nerve pain, numbness or tingling at annual medicals or now at wtc health program medicals. I have also contacted and had the same discussion with John Howard, director of the WTC Health Program going back to 2006 as well the director of the Mt. Sinai WTC Health Program, Stony Brook Program and the WTC Health Registry. To date none have done so. If you dont ask the question do you nerve pain, numbness, or tingling, you cant even begin to identify the scope of the problem. This study by Winthrop is just scratching the tip of the iceberg, maybe now finally the WTC Health Program will take steps to identify and address this illness.

Jene Jernigan

I was a loss verifier for the SBA and spent some of most every day in Ground Zero for 3 months. As soon as I returned home in mid-December, I noticed my toes on both feet were completely numb. I had to concentrate to be able to curl my toes. The condition has persisted to the present. I thought it might be physical nerve damage from steel-toed boots. My neurologist says I have no nerve damage. He suggested diabetes. My GP says no diabetes. Apparently I have neuropathy which is a nerve problem with no explanation.

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