Boston Sunday Globe City Weekly Section: For some, breathing is never easy

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JAMAICA PLAIN

For some, breathing is never easy

By Glenn Yoder, Globe Correspondent | June 18, 2006

Hillyer is in her mid- 50s, but she doesn't go out much anymore. She

doesn't ride in cars often, and certainly doesn't take public transportation.

She can handle the occasional walk around her Jamaica Plain neighborhood, but

she brings a filtered mask in case she starts to have trouble breathing. The

one place she feels truly comfortable, Hillyer said, is in her apartment.

Even though that's where her troubles began.

Eight years ago, said Hillyer, a freelance editor who works from the

apartment, she began having breathing problems that she attributes to a leaky

furnace in the basement.

Matters got worse. She developed migraine headaches, digestive problems and

insomnia, spurred by ``anything that wasn't neutral in the air, " she said.

``I had already been sensitive for some time, " she said, ``sensitive to

people wearing perfume, documents from publishing house s that were hard for me

to have near my face, but this kind of tipped the balance when I had the

exposure over several weeks. "

Doctors and researchers say low-level exposure to irritants or allergens

over an extended period of time can lead to the condition Hillyer was diagnosed

with: multiple chemical sensitivity , a.k.a. hypersensitivity or chemical

hyperreactivity .

Those suffering from MCS -- and there appears to be no authoritative

estimate of their numbers from US health officials -- describe symptoms ranging

from

headaches and nausea to short-term memory loss after the slightest contact

with triggering irritants.

And city living can exacerbate the condition, as chemical sensitivities and

asthmatic complications continue to show up in different ways in urban life,

said Dr. Oliver , who practices occupational and environmental

medicine at Massachusetts General Hospital .

``I think in general that living in an urban environment is worse, because

air pollution is worse, vehicular exhaust is more concentrated, and there's

more people on the streets wearing fragrances, " Oliver said, noting that city

dwellers have little control over their environment.

The health issue is beginning to attract local notice. The Boston City

Council recently backed a proposed state initiative to improve air quality in

schools and public buildings. But City Councilor Chuck cautions not to

expect a change for the hypersensitive too soon.

In order to fit the clinical definition of the syndrome, the symptoms must

affect multiple body systems, Oliver said. Most often, the neurological and

respiratory systems are hardest hit, but the gastrointestinal and

musculoskeletal systems can be affected as well, she said, and any chemical

encounter,

including fragrances or pesticides, can trigger the symptoms.

``It's important to get a neurological evaluation before deciding that it's

attributable to MCS, " said Oliver, who has diagnosed the condition since the

late 1980s . Oliver said her primary suggestion after making a diagnosis is

to have the patient try to identify the chemical source or sources of their

symptoms, and eliminate it from their surroundings.

The debatable nature of the syndrome is what creates true problems in

finding adequate housing, said Barbara Lybarger , general counsel for the

Massachusetts Office on Disability .

``Allergies are a little less simple to prove than some of the more obvious

things. If you don't have a leg, you don't have a leg, " she said. What

constitutes fair treatment for those with sensitivities ``is a case-by-case

basis. "

Although MCS has been recognized by the Americans with Disabilities Act

since 1991 , as well as by the Social Security Administration , US Department

of

Housing , and the US Environmental Protection Agency , landlords often must

comply with the Fair Housing Act and make ``reasonable accommodations " for

tenants. The definition of ``reasonable, " however, is unclear, said Jack

Spengler , a professor of environmental health and human habitation at

Harvard's

School of Public Health who has conducted extensive research on indoor air

pollution .

``In public housing, it's reasonable that the landlord take care of those

things, " he said, listing notification of painting and cleaning projects and

the use of different products as concerns that should be high on landlords'

agendas. ``But where does the line of reasonableness come in? "

The Fair Housing Council of Greater San 's website,

accessiblehousing.org , which urges tenants to understand their housing rights,

states that

under current federal law a reasonable accommodation is a modification that

doesn't impose ``an undue financial or administrative burden on a housing

provider " or require ``a fundamental alteration in the nature of its program. "

But even so, it's not clear-cut, and the gray area that surrounds a

diagnosis of the condition makes it difficult for landlords, said Skip

Schloming ,

executive director of the Cambridge-based Small Properties Owners Association .

``It's a tricky issue because if it's not clearly diagnosed, then you have

people who may be paranoid, that fear these things, and one would hope that a

landlord would still do what they can and assume that the person is right, "

he said.

Marilyn Hoffman, 75, who said she has suffered from MCS for more than half a

century and who moves from hotel to hotel downtown in search of relief,

knows the pain of misinterpretation better than most. Hoffman, has a list of

demands that includes some she admits seem unreasonable. Every minuscule

element

of her life needs attention: the paint on walls, the type of wood in

furniture, scents in the air. For five decades, she has battled to prove there

is

something sickening her. However, she said, what the eye doesn't see, the mind

often doesn't believe.

``It's not just the physical hurt, but the psychological, emotional impact

that family members, friends, people you work with, how they treat you, " she

said. ``They're afraid of something they don't understand. "

The scientists are out there

Chemical sensitivities seem to be diagnosed in tandem with well-publicized

incidents, Oliver said. Physicians saw a boom in cases in the early 1990s

when sick building syndrome (which many doctors say can lead to MCS) and

chemical illnesses in Gulf War veterans grabbed headlines. In May 2004 , the

condition again made the papers when Dan , a former Boston University and

Holy

Cross football coach, died at age 48 from complications stemming from MCS .

As awareness of chemical sensitivities has slowly crept into the public

consciousness, quiet changes have accompanied it. In March , the superintendent

of the Upper Cape Cod Regional Technical School in Bourne publicly discouraged

students from wearing colognes, perfumes, and body sprays. And advocacy

groups have pushed to ban fragrances from public areas with mild success --

this

spring, the state Department of Conservation and Recreation agreed to stop

using four out of five pesticides in state parks after pressure from a group

that Hillyer is active in, Jamaica Plain's Neighborhood Pesticide Action

Committee .

More is occurring out of the public eye. The director of the Massachusetts

Institute of Technology's technology and policy program, A. Ashford ,

who teaches courses in environmental law and policy and has written numerous

books on the subject, said in the six years between the first and second

editions of one of his books in the 1990s, twice as much peer review was

conducted as had been performed in the previous 50 years. Translation:

scientists

are looking into it more.

``There's been a real acceleration of scientific work related to the

condition, " Ashford said.

But the problem is far from solved, or even accepted, said Lemieux ,

the president of an Andover-based statewide support network, the Massachusetts

Association for the Chemically Injured .

``It's never enough, wheels turn very slow, but I would say progress is

being made, " she said, noting that her group passes information to the housing

bank MassHousing so landlords can learn about the effects of chemical

sensitivities.

``Housing is the most difficult " aspect of the condition, she said. ``We

don't have a listing that I can go down and say, `Try here and here and here.'

It's about putting in legwork, and when people are sick it's very hard going

out and looking at an apartment. "

In Canada, where by one estimate about 25 percent of the population suffers

from some form of allergy or chemical sensitivity, the national housing

agency built model homes in the 1990s specifically for the hypersensitive, said

Harvard's Spengler, who toured one of the houses in Ottawa.

Canada ``recognized this as a national problem and worked toward a

demonstration that would be available to other builders on how to approach

this, "

Spengler said. But he stopped short of saying the designs should be put into

common practice.

``It puts into a whole other regime what architects and engineers have to

design. Do we now require all our buildings, all our places to be so

ventilated? It's a tough issue, " he said. Spengler gives the United States a

passing

grade ``in terms of physical handicaps, with public access ramps and doors.

Those are physical, " he added, ``but this is a lot more complicated. "

Some try to create their own safe places. Although building and construction

companies are growing more sympathetic to the plight of the chemically

sensitive and stocking up on green-friendly supplies, said Lesyna ,

retailer

manager for the Boston Building Materials Co-op , there is one major

impediment.

``The cost is exorbitant, " she said.

A change is uh, gonna come

On the political front, change has been glacial, said. In 1995 , City

Councilor Maura Hennigan offered an indoor air quality city ordinance to

improve the quality of life for people with asthma and chemical sensitivities.

It called for the Department of Health and Hospitals to inspect public

schools and public buildings twice a year, but wasn't implemented until 2003

when

the Healthy Schools Taskforce was organized by the school department,

said.

Statewide, a bill that would make mandatory a now-voluntary list of green

cleaners for schools and public buildings is in its second swing through the

state Legislature.

``We already have a good infrastructure, " said Tolle Graham, healthy schools

coordinator for the Massachusetts Coalition for Occupational Safety and

Health . ``Our state has stood out as one of the small number of states that

has

its own program, but now let's make it mandatory for everybody. "

Ashford, the MIT professor, said the federal government is not doing enough,

and blamed a conservative administration for not taking the sensitivity

threat seriously.

``When some key decision makers' wives and kids are affected, maybe " the

issue will be dealt with on the national level, he said. ``Are we going to

start

taking precautions on hurricanes after Katrina? Sure, but it had to happen

first. "

Ashford, who conducted a nine-country European study in 1995 on chemical

sensitivity, said other countries have dealt with the problem more seriously

than the United States. Like Canada, Japan and Germany have dug deep in hopes

of

learning how to deal with hypersensitive individuals, he said. But Ashford

bemoans the fact that the problem isn't yet considered critical locally.

``We could easily eliminate the next generation of chemically sensitive

people if we just paid attention, " Ashford said.

But with the issues in legislators' minds, can a change be expected?

``In the short run, no, " said. ``Given the lack of resources that

we've been able to focus, I don't think there are any short-term expectations

of

resolving the issues across the board. "

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