Monday, August 22, 2011

Four Sisters, One Rare Disorder - BATTLE IN THE BARRIO part 1/4

From left: Lizette, Martha and Gloria Herrera, outside their family home in the Pilsen neighborhood of Chicago. After a lifetime of living near the Fisk coal-powered plant, Martha and Gloria have developed lupus. Martha’s daughter, Lizette, also is showing early signs of the disease.

NOTE: The following is the first of a series of four stories about the environmental and health impact of coal fired power plants on densely-populated, low income Chicago communities. It's called "Battle in the Barrio: the Struggle in Chicago's Pilsen Neighborhood Against Pollution." More parts of this series, along with visualizations and some interactive elements, will be posted in the coming weeks. The series is part of a journalistic research project that culminated in a master's project for the University of Illinois at Urbana-Champaign.

Part One: Four Sisters, One Rare Disorder
Part Two: Old Problems, New Attention
Part Three: The People VS the Bottom Line
Part Four: Hopelessness and Hope in Pilsen
Visualization - Is there injustice in Pilsen?
Visualization - Chicago's Pilsen neighborhood struggles with pollution
South-side children have greatest exposure to lead in Chicago, health department data shows

For most of their lives, two of the four Herrera sisters -- Gloria and Martha -- thought that the hardest part of living in the Pilsen neighborhood of Chicago was staying safe from crime.

On a mid-July morning, as a fast-moving thunderstorm poured cool rain over the neighborhood and provided relief from the most oppressive heat wave in years, the two sisters reflected on some close calls.

“We were never allowed to hang out on the sidewalk,” Gloria, who is now 43, remembered of her childhood in Pilsen.

Outside, thunderclaps ricocheted off of the old brick houses, off the pastel-painted facade of restaurants with names like Nuevo Leon, La Casa Del Pueblo and La Cebollita, off murals of Che Guevara, Jesus and Mexican cowboys.

The day before, the National Weather Service measured a high temperature of 99 degrees from the Chicago O’Hare International Airport, with 78 percent humidity. The temperature, measured by the television station the sisters had muted while they talked, fell to 71 degrees. The raindrops splashed on the porch they had spent their summers on as children.

When Gloria wanted to play with neighborhood friends, they would have to get permission from their parents to come over – and then if they did get permission, her friends could only sit with Gloria on the porch. “Two houses down, there were gangbangers in that house. And there were gangbangers across the street on the corner house.”

“We had, like, four different gangs all around us,” said Martha, 54.

The streets belonged to the gangs. There was, however, something that belonged only to the children in the neighborhood.

“That’s why we played soccer,” she said. “Because it was ours, you know.”

The nearby playground of Benito Juarez High School provided a level of safety from the industrial streets of Pilsen, and a place where children could be themselves. Gloria and Martha still had to keep on their toes on the nine-block journey between their home on Carpenter Street and the high school.

“We would be coming back from soccer practice at five in the afternoon, or seven in the evening, and the gangs would be shooting at each other, and we had to crouch down and run home for two blocks. We would be hiding between cars just to get home safely,” Gloria said.

And even at home, the threat sometimes lingered.

“We would be sitting here watching TV, and you would hear gunshots,” she said. “We would throw ourselves on the floor.”

“That’s the life we learned to live. And our kids, also, same thing.”

Gang violence is an ever-present part of life in Pilsen, a sooty, post-industrial barrio on Chicago’s lower west side. But just in the last several years, a very real threat has trumped the Herrera’s safety concerns about gang violence. Unlike a stray bullet from a gang-banger’s gun, it could not be dodged by hiding behind cars.

Gloria remembered the exact day it started: Feb. 7, 2001.

“I remember, because it was very traumatic for me,” Gloria said.

She was attending a banquet for La CLASA, the Chicago Latin American Soccer Association, when she couldn’t take a full breath. “I just couldn’t breathe,” Gloria said, “So I was rushed to the emergency room.”

Gloria was diagnosed and treated for pneumonia and sent home. On July 7, she suffered a heart attack at work. A co-worker took her to the University of Illinois Medical Center, where hospital staff administered a battery of tests and determined that Gloria’s liver and kidneys were shutting down. Doctors gave her three days to live.

“It was our 9/11,” Martha said.

There was another curiosity in Gloria’s test results. Despite being a nonsmoker and a relatively young, athletic soccer player, doctors determined she had “smoker’s lungs.” Doctors couldn’t believe that Gloria had never smoked a day in her life.
“What are you hiding, you know?” Martha said, mimicking the doctors’ suspicions.
“They thought I was lying, that it was smoking,” Gloria said.

She remained in the hospital for the better part of a month, much of it in pain, without a diagnosis before Martha, told the hospital staff to diagnose Gloria with something or discharge her.

“So then the day after, they found what I had.” Gloria said. “And it was lupus.”
Lupus, or Systemic Lupus Erythematosus (SLE) as medical experts sometimes call it, is a disease of the immune system. Instead of attacking foreign invaders such as bacteria and viruses, the immune system of someone with lupus attacks the entire body, according to the Lupus Foundation of America (LFA).

“Lupus is a chronic, autoimmune disease that can damage any part of the body,” the LFA wrote on its website, “Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.”
Lupus can cause abnormal blood clotting, headaches, swollen joints, fever, anemia and swollen extremities.

“Many of these symptoms occur in other illnesses besides lupus,” the LFA wrote. “In fact, lupus is sometimes called ‘the great imitator’ because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.”

For Gloria, those symptoms also included reduced blood circulation in her hands, which caused one of her fingers to turn black. Amputation would have been necessary, had the finger not responded to blood thinners and returned to a normal color.

Despite being a nonsmoker and a relatively young, athletic soccer player, doctors determined she had “smoker’s lungs.” Doctors couldn’t believe that Gloria had never smoked a day in her life.
Women are more susceptible, and Asian, Native American, African American and Hispanic women (such as Gloria and Martha) are most at risk of developing lupus, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Although no comprehensive study has been done to measure the number of people affected by lupus, the medical community believes about five million people have the disease worldwide, according to the LFA, and that the frequency of lupus somewhere around 0.08 percent. Researchers also have found the likelihood of developing lupus jumps to between two and five percent for non-identical twins, meaning that there’s an important genetic component to lupus.

Even so, only about ten percent of lupus patients have a first or second-degree relative who have lupus, according to the S.L.E. Lupus Foundation.

Gloria’s doctors told her that they didn’t think lupus was a genetic disease.

That’s why Martha didn’t expect to be diagnosed with the disease in 2003.

“I was coming down the stairs and I fell, and of course I ended up in the emergency room,” Martha recalled. “A year later, I got a blood clot in my leg. Two weeks after that, it goes to my lungs.”

More tests revealed that Martha had lupus, just like her sister.

Later, the two other Herrera sisters, Patti and Berta, also developed lupus, along with the oldest of Martha’s three daughters. And now Lizette, Martha’s middle daughter, who also lives in Pilsen, shows early signs of developing the disease, along with other medical problems.

“Just recently I was in the hospital. I had fainted at work,” Lizette Herrera said. “Three months before that, I had a seizure, and every time I got sent home, because it was an unknown cause.”

“I don’t drink, I don’t smoke. I just work and take care of my son, and that’s it. And while we’re talking, I feel dizzy and fall. It’s been happening more and more as I get older, it’s just so often.”

Martha laughed.

“We laugh at things because there’s no other way,” she said.

So far, no “lupus gene” has been found, but lupus researchers believe it takes both a genetic predisposition and certain environmental circumstances for a patient to develop full-blown lupus. “While a person’s genes may increase the chance that he or she will develop lupus, it takes some kind of environmental trigger to set off the illness or to bring on a flare,” the LFA concluded. Such an environmental trigger could be infection, severe emotional or physical stress, illness or injury. Pollution could also be a trigger.

Since Gloria’s brush with death and the barrage of other medical catastrophes, the Herrera family is looking at the 450-foot tall stack of the Fisk Generating Station, which looms over Pilsen homes, with increasing suspicion.

“They’re saying that it’s not hereditary,” Martha said. “Why is it that we all have signs?”

According to the U.S. Environmental Protection Agency (EPA) Toxic Release Inventory (TRI), in 2008, the Fisk coal plant emitted 4,485 tons of sulfur dioxide and 1,172 tons of nitrogen oxides.

That same year, the EPA released a 479-page report titled “Integrated Science Assessment (ISA) for Sulfur Oxides – Health Criteria,” which found that short-term exposure to SO2 could cause “an array of respiratory outcomes, including respiratory symptoms, lung function, airway inflammation, AHR (airways hyper responsiveness), and ED (emergency department) visits and hospitalizations.” The EPA has noted a similar effect from nitrogen oxides.

Additionally, the plant emitted 126 pounds of lead, 82 pounds of mercury and 755 tons of particulate emissions  into Pilsen and the nearby Chicago area.
All of those emissions, researchers say, are costing lives in Chicago. The Fisk coal-powered plant contributes to 15 deaths and 23 heart attacks each year, according to a 2010 report by the Clean Air Task Force, which used the same peer-reviewed methodology as the EPA.

The Herreras live a half of a mile from the plant, near Eighteenth Street.

“It was just part of everyday life,” Martha said. “You wake up in the morning, and it smells horrible. The hotter it got, the worse the smell.”
 “All of our kids are migraine sufferers now,” Gloria said. “All my four, they all get migraines. I suffer from migraines. So I was told not to take Excedrin because according to what the doctor said, Excedrin triggers lupus.”

“And so, OK, so pollution doesn’t trigger anything? Everyone has the same symptoms.”

It may turn out that the Herreras are on the right track, as a growing body of medical research is linking industrial pollution to flare-ups of lupus.

A study of an African-American community in Gainesville, Georgia, published in 1997, found a nine-fold increase in incidence among those with long-term exposure to industrial pollution. The two researchers from the Rollins School of Public Health at Emory University who conducted the study concluded that “long-standing exposure to industrial emissions may be associated with an increased risk of lupus.”

Another medical study, this one conducted in Montreal, Canada, and published in the journal Environmental Health Perspectives in 2010, found that an increase in particulate matter pollution may trigger disease in those who have lupus.

“To our knowledge, the results presented here are the first to suggest that autoimmune inflammatory diseases such as SLE may be associated with variations in air pollutant levels,” the researchers wrote. “These findings add to a multitude of studies that have consistently related the adverse health effects (both acute and chronic) of ambient fine PM (particulate matter).”

“This study also adds weight to concerns that ambient air pollutants may be an important trigger of inflammation and autoimmunity.”

Gloria and Martha said they only recently have become concerned with the quality of air in Pilsen. Before the diagnoses, the smoggy Pilsen air was simply a fact of life.

“It was just part of everyday life,” Martha said. “You wake up in the morning, and it smells horrible. The hotter it got, the worse the smell.”

The 450-foot stack of Midwest Generation’s Fisk power plant
looms over the Pilsen neighborhood of Chicago.
They both remembered a time when they could see piles of coal, tall enough to see from blocks away. In the heat of the summer, they would catch fire, and an unmistakable burning stench would waft through the neighborhood.

“We used to practice soccer around there when we were younger. And we would come back, and the coal would be burning. Then the fire trucks would be over there putting it out, and you know, people doing their daily things and the coal was burning,” Gloria said.

“It was just, you know, like how people live where volcanoes are. It was like a natural thing,” Martha said. “There were mornings when you could wake up and you could smell it.”

Today, Gloria takes 12 different medications to control her lupus. She could afford the bill until recently, when she lost her job working for the city.

“It’s actually funny. I was a rapid response coordinator, so I would assist people that were being laid off,” she said.

Her job entailed going to companies throughout the Chicagoland area and educate newly laid-off workers about how to obtain services for re-employment or training.
“And now I’m on the other side, and I can’t seem to get any services.”

Her medications will cost her about $1,000 a month now, she guesses, because she has no insurance. She doesn’t know how long she’ll be able to afford taking them.
“You work all of your life, you know, to build something for when you retire, and then the same system is bringing you down,” Martha said. “Honestly, I worry a lot about her.”

It’s one more frustration to add to life in Pilsen. Martha said her brother, who is a police officer, is concerned about his family’s safety, and is “sick of this neighborhood.”

“He just wants to move,” Martha said.

Lizette Herrera said she doesn’t want to raise her son in the neighborhood, and she and her fiancĂ©e are looking to move out. She remembered one day when she was seven or eight (she couldn’t recall exactly), when she had to hide behind garbage cans to avoid a spat of gang violence. A man had been shot in the leg, and was bleeding in the street.

“I remember like it was yesterday,” Lizette said. “I was so little. We were all so little.”

“One of my sons said it was just like the movies, that the blood is shooting out,” Gloria said.

“He was holding his leg, screaming,” Lizette said. “And everyone was there.”

“They’re under 10 and seeing all of this,” Gloria said.