Southie sickness

Too many women in South Boston have an awful disease. Now, doctors are poised to start asking why.

by Ben Geman

Maybe it was just age, Liz Lombard thought. "I said, 'Gee, I'm 38, maybe I have a bit of arthritis,' " she remembers. It was about three years ago, and Lombard had started to feel pain in her joints. She noticed her hands and feet swelling a bit, slowing her down in her job as a banquet waitress at the Copley Plaza Hotel. Other possible explanations popped into her mind: maybe it was that new bed she and her husband had finally splurged on?

But it wasn't the bed, or age, or arthritis. Today Lombard's lips are wrinkled and nearly colorless, her hands curled and knobby. The skin on her forearms is hard and shell-like to the touch. The small, red-haired Lombard has none of the dexterity she had just a few years ago: she can't tie her shoes, or take change at the store, or reach for things in her home.

"Leave the cover off of Play-Doh overnight, and then try and use that Play-Doh," she says, describing the texture of her skin. "When you touch me, it is hard as a rock."

The disease she has is scleroderma, an autoimmune disorder that causes a hardening and loss of elasticity in the skin. It can also affect the kidneys and lungs. Ultimately, it can be fatal. In a sense, her skin is shrinking around her -- she likens it to that feeling when you sit down on the bottom of your coat and it pulls against your back.

"I am shrinking from the outside," she said recently in the South Boston apartment she shares with her husband and five children. "And it is a horrible feeling."

Liz Lombard might have gone on suffering alone, if not for a South Boston neighborhood institution: gossip. "This is a tight community," she says. "For better or worse, we all know each other's business."

Soon after her diagnosis, Lombard learned that a co-worker's relative, also from Southie, had the same illness. She asked around a bit and learned that several other neighborhood women also seemed to have been stricken. That, in turn, led her to get in touch with Suzanne Condon, director of the state's Bureau of Environmental Health Assessment, asking the bureau to examine what seemed to her like a lot of scleroderma for a little area. The letter she wrote Condon in early 1998 was simply worded: "Hopefully this is a beginning," she wrote. "A time to ask questions and get some answers."

State Senator Stephen Lynch worked with Condon to survey South Boston residents, distributing leaflets in the neighborhood in late 1998 to try to find out just how many people were affected. As Lombard suspected, the results were alarming.

"In a neighborhood the size of South Boston, we would expect to see about five or six cases," says Condon. "We have already seen about two dozen."

Today, the Massachusetts Department of Public Health (DPH) and doctors from nearby hospitals are preparing to take a closer look at what these women have in common -- and what may be behind the apparent frequency of this debilitating, frightening disease. Now that the state DPH has gathered basic information on those believed to be suffering from the illness, it's poised to begin the even more complicated task of confirming the data and determining what, if anything, these patients share regarding their workplaces, their neighborhood histories, and their symptoms. Scleroderma sufferers and concerned neighbors hope the research will provide some answers.

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Scleroderma is not the first autoimmune disorder to pop up in South Boston. In fact, until recently it wasn't even the most well-known.

Lupus, another autoimmune disorder that affects connective tissue, is the disease behind Miles for Michelle, an annual South Boston road race that raises money for research and public awareness. The event is a fundraiser for the foundation named after Michelle Hurley, a South Boston woman with lupus whose illness has progressed so far that she's confined to a wheelchair. This year's race, held late last month on a sunny Sunday morning at the sprawling Bayside Expo Center, attracted a large field of runners and onlookers -- including former state-senate president William Bulger.

Stephen Lynch has been pushing the issue in the legislature, requesting money in the stalled state budget to fund the planned study of scleroderma and lupus in South Boston. One reason for his interest is that Lynch's cousin, like Hurley, was stricken with lupus; she died last year. (Another connection: Liz Lombard's brother is married to Lynch's sister.)

According to the neighborhood survey, which tracked lupus as well as scleroderma, the rate of lupus in Southie is at the outer margin of normal (about 50 reported cases) -- that's higher than average, but nowhere near as troubling as the scleroderma rate.

Lupus and scleroderma are separate illnesses, but they are in the same disease family. And with apparently elevated rates of both, many South Boston residents wonder whether this is more than just a statistical blip.

Mia Gallagher, Michelle Hurley's sister, runs a lupus support group that draws victims of both diseases. She doesn't think it's a coincidence that two autoimmune disorders are striking the same neighborhood. Instead, she believes there's an environmental link.

"Something environmental is causing this. There has to be something," she says. "There are so many environmental triggers in this neighborhood."

The environment is a raw subject for many in South Boston. Residents for years have been concerned about toxins in the neighborhood, whether from nearby Logan Airport, the Boston Edison plant, or elsewhere. State environmental officials have identified a high number of oil-release sites; oil has seeped into the ground at the Coastal Oil yards in Southie. Gallagher also points out that her own windowsills quickly get black with soot after she cleans them -- which she attributes to jet exhaust from Logan.

"The fact is that we are consistently and continuously uncovering more and more toxic hazards in this area," says South Boston neighborhood activist Tim Hayes, president of the M Street Park Neighborhood Association and a member of Environmental Health Watch, a South Boston group that focuses on environmental awareness and justice. "We are basically under siege environmentally, and the downside of that is disproportionate health figures."

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But linking diseases to environmental causes is scientifically slippery. The simultaneous presence of environmental hazards and disease is far from proof that one causes the other.

Medically, scleroderma and lupus remain mysteries. Doctors can't say for sure what causes either disease, and they stress that any link to environmental factors in South Boston is purely hypothetical.

"There is speculation that this may be related to exposure to different petroleum products, but it is not known if this is the case," says Harvey Bidwell, director of the public-health initiative at the South Boston Community Health Center, which has been working with residents and health officials on the scleroderma issue. Though he acknowledges concern that "in South Boston there is a lot of exposure to environmental toxins in the air and the ground," Bidwell stresses that "it is basically not known what causes or triggers scleroderma."

And that's a crucial point, says Lombard's physician, New England Medical Center's Elena Massarotti, who believes it would be a mistake to point the finger at the environment, at least until more research is done on women who appear to have the ailments. "There is no known cause of the disease," she says. "It is premature to suggest any environmental link at this point. . . . It is just an investigation right now."

The investigation is set to begin soon, according to the DPH. Now that health officials have a list of South Boston residents with scleroderma, they will conduct comparisons of the way the disease is "presenting" itself in its victims and identify the common threads in their personal histories. Only then can any meaningful theories start to emerge.

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The spread of the illness in South Boston is tragic, but physicians and activists see one good that has come from the misfortune: the work that Liz Lombard, Mia Gallagher, and others have done to get the issue onto the radar screen of health officials.

"For me, this is a story of inspiration I feel from a patient [Lombard]. . . . It is a wonderful story about what a person can do to take charge of something and create something positive out of a terrible life experience," says Massarotti. "She really started this, and I give her credit. If there is a link found, it is because of her. This has been a terrible thing for her and her family, and as she has become more disabled she has also become more active."

Seated at the kitchen table of her three-bedroom apartment filled with plants, family photos, and artwork by her children, Lombard, when describing the illness that has left her so debilitated, is quick to look at the bright side. "I don't mean to complain," she says. "We are blessed. We do not go hungry." But though she retains hope, it's impossible to ignore that the disease has progressed -- it's getting harder for her to swallow. "I worry constantly," she says. "My fear is that I leave my children without a mother."

Spread before her are the contents of her thick file on scleroderma, with handwritten notes scrawled on a piece of yellow legal paper, part of the unofficial tally of scleroderma victims she began when she first suspected that she was not alone. Lombard is reluctant to credit herself for the attention now paid to the ailments in her neighborhood. She simply wants studies by health officials to uncover a reason behind what she believes isn't just a freak occurrence of illness. "I hope," she says, "that we can avoid more people getting this."

Ben Geman can be reached at bgeman[a]phx.com.