Sunday, August 14, 2011

Reproduced with permission from the Valley News. May not be reproduced or distributed. 

By Krista Langlois
Valley News Staff Writer

   Thetford -- Nicky Corrao can't keep track of how many household products are scented these days -- lavender-scented trash bags, "fresh and clean" dryer sheets, air fresheners, beauty products, cat litter, cleaning products.
   "If you read the label," Corrao said, "everything says 'fragrance' at the end."
   Corrao and a growing number of others who identify as having multiple chemical sensitivity (or, in medical circles, idiopathic environmental intolerance, or IEI) scrupulously avoid contact with such products. They say exposure to fragrances and other common chemicals provokes a multitude of symptoms, including nausea, headaches, migraines, difficulty breathing and general fatigue. As if those symptoms aren't bad enough, they say, their need to avoid exposure to the chemicals forces them to also deal with social isolation.
   "I think a lot of people just don't even realize" how many fragrances they're using, Corrao, 57, said at an interview at her home. "When you're used to it, you don't smell it anymore."
   Though there is skepticism that this degree of chemical sensitivity is a genuine affliction, a "fragrance free" movement has been emerging from it. The city of Halifax, Nova Scotia, enacted a municipal "No-Scent" awareness program five years ago to encourage "employees to be aware of others who may suffer allergies or sensitivities to fragrances."
   Evergreen State College in Washington has a campuswide fragrance free-policy, and here in the Upper Valley, the Northern Lights Quilt Guild maintains a fragrance-free meeting space and asks members to refrain from wearing fragrant products.
   Even for people who don't correlate health reactions to synthetic fragrances, sometimes just sitting next to someone who wears a strong scent is enough to bring them on board with the movement.
   "Many people who are not ill still have smelled enough of this for now, thank you," said Linda Papademas, of Enfield, who also said she has IEI.
   "I was tired of feeling like this crazy woman, but now I feel like more and more people are understanding," Corrao said. "Even just three years ago, people would say, 'Oh Nicky, she's just chemically sensitive, we have to be careful around her.'"
   Today, though, Corrao, Papademas and others in the Upper Valley, like Sharon Racusin of Norwich, are writing letters, talking to neighbors and trying to educate people about what they say are the effects of near-constant exposure to a multitude of petroleum-derived chemicals and fragrances.
   "These things are toxic," said Corrao. "They are made from petro-chemicals. And there is absolutely no government agency that regulates the fragrance industry."
   Corrao has a point: The Federal Fair Packaging and Labeling Act requires a list of ingredients on most products, but because fragrances are exempt, their chemical makeup has gone largely undocumented. Many companies protect the composition of their fragrances as trade secrets.
   Some environmental and public health groups have been trying to expose the chemical makeup of these unregulated scents. The nonprofit Environmental Working Group analyzed 17 popular fragrances last year and found that they contained 38 undisclosed synthetic chemicals, most of which had never been tested for safety. Many were categorized as "sensitizing" chemicals, which are said to be capable of causing allergic reactions in roughly 30 percent of the population.
   But though such chemicals are found in many home and beauty products, it's still up for debate whether they're the culprits behind the host of ailments suffered by people with IEI.
   Those in the fragrance-free camp insist that when they eliminate chemical scents from their lives, symptoms clear up. Those who shake their heads in disbelief like to point out that the people afflicted by IEI tend to be Prius-driving, Co-op-shopping, middle-aged white women. But one University of Texas study suggests that up to 5 percent of the population might be afflicted by some degree of IEI.
   Yale-educated Dr. Robert McLellan is head of the Live Well, Work Well program at Dartmouth-Hitchcock Medical Center and chief of occupational and environmental medicine there. He said the medical community's decision to use the label "idiopathic environmental intolerance" in lieu of the more common "multiple chemical sensitivity" is to avoid confusion between this syndrome and a more clearly treatable and identifiable chemical sensitivity -- for example, when a person reacts when he or she comes in contact with poison ivy or suffers asthma triggered by air pollution.
   McLellan said that despite being idiopathic -- of unknown cause -- IEI is fairly well accepted by medical professionals.
   "What we now call IEI ... is a very well received and described syndrome. In my field and in the field of allergy, where people with this tend to end up, there are many, many physicians who have recorded thousands of patients who have come to them with complaints characterized by multiple symptoms provoked in environments that don't bother most people. Commonly, these people will ascribe this to a chemical odor in the environment.
   "Typically they say that these symptoms seem to come and go based on whether they're in what their perceive as a offending environment. ... But there's nothing a doctor can measure or see on most lab tests."
   It's this lack of a concrete cause-and-effect reaction that causes other medical professionals to doubt the authenticity of IEI.
   Edward Kent Jr., an allergist at Fletcher Allen Health Care in Burlington with 20 years of experience, said he is "skeptical that such an entity exists."
   "There are no controlled studies to demonstrate (IEI's) presence, and if these do exist they do not behave in a fashion that medical illnesses are expected to behave in," Kent said. He said that, though he's seen patients who have self-diagnosed themselves with IEI, he has never treated such a patient, because "it's not a recognized disorder by the medical community, and it doesn't fall into the type of disorder that can be treated by allergists or physicians."
   Kent said he doesn't deny that the people who come to him have inexplicable and very real symptoms. However, he said, every five or 10 years a trendy new "disorder" crops up to explain these symptoms: A decade ago, it was chronic candidiasis, before that it was chronic mono, and now, Kent said, it's multiple chemical sensitivity.
   "I'm not denying the presence of the symptoms," Kent said. "I'm denying their conclusion as the cause of the symptoms. ... The people who are generally supporting this have a religious fervor about it."
   Still, McLellan said, just because something has an unknown cause and isn't measurable doesn't mean it's not real. Many people have chronic back pain that renders them disabled, McLellan said, and yet their CAT scans and MRIs show nothing wrong with their backs.
   When he gives lectures, McLellan will often ask how many people in the audience have ever felt bad, even nauseated, after being exposed to an odor: If you get sick eating pizza, will you feel nauseous next time you walk by that pizza place? Many people raise their hands and say yes.
   "We know a fair amount about what we call the chemo-sensory system," McLellan said. "People have evolved a very sophisticated sensory system to detect subtle changes in our environment. So we have the capability of tasting very, very subtle differences in chemical cocktails we're exposed to in, say, wine.
   "Someone who's good can tell you which side of a hill the grapes grew on," he continued. "Likewise, we have noses that are able to detect very subtle chemical variations in our chemical environment. The nose has two types of nerves: one is smell, the other is a chemical irritant sense.
   "It turns out when that nerve is stimulated there are things that happen in the brain and lungs almost as a type of reflex."
   But there's a difference between someone who's gotten a headache from a strong perfume and the kind of person who ends up in McLellan's office. The difference usually has to do with a reaction that affects one's quality of life or ability to function socially.
   "Now comes a critical question," McLellan said. "Why? Why can't they function normally? What's the difference?"
   It's a question that science hasn't yet answered. But one of the reasons that McLellan, who specializes in occupational medicine, works with so many IEI sufferers is because the condition has largely come to affect people in the workplace.
   At home, it's possible to switch to laundry detergents, cleaning products and beauty products that are "free and clear" of synthetic perfumes and dyes, thus largely avoiding the problem. But indoor spaces are becoming better insulated, and in poorly ventilated office buildings, people with IEI can rarely escape the chemical fragrances that co-workers trail behind them like second-hand smoke. Many people with chemical sensitivity say that the hardest thing isn't avoiding the chemicals or coping with the symptoms, but rather interacting with others.
   "Probably the most difficult thing about multiple chemical sensitivity is isolation, with the second most difficult being getting people to take us seriously," Linda Papademas wrote in an e-mail. "Living with symptoms is almost easy by comparison."
   Papedemas, 52, worked in an office (she prefers not to say which one) for many years. But after her immune system suffered from prolonged low-level carbon monoxide poisoning, she began to feel particularly sensitive to the synthetic fragrances that she suddenly noticed everywhere -- particularly at work.
   "Most people's clothing smells quite strong to me, and many give me a headache and I have a hard time breathing," she said. "I had to quit my job in January. I can't be around people who have used these products and have an air freshener behind their desk. ... My co-workers treated me like a hypochondriac."
   Sharon Racusin said she'd worked in the same office at DHMC for 20 years. "I worked with so many people, 200 a day coming in and out to the help desk, and it never bothered me," she said. But she thinks there's a chemical threshold, and one day, she reached it.
   It got so bad that she had to be transferred to a new office, where she now sits behind closed doors in her own room. "DHMC was wonderful" in accommodating her condition, she said.
   For Corrao, a cancer survivor who does her bookkeeping work from home, "it's really hard to tell someone you're close to that they can't come in your house. It's embarrassing."
   There are lots of things that I can make decisions about," Corrao said, "but I want to be part of society and be around people I love, and I can't control what they're choosing."
   "Many people just love (these scents) so much that they can't see that they're harming you, and maybe harming themselves as well," Papedemas said.
   Papademas said that when her neighbors do laundry, the air coming from their dryer vents is so "intrusive" she must go indoors and close all her windows. She hopes that if people know she and others like her are out there, they might choose different products, those that are fragrance free.
   "I think a little neighborly consideration and awareness would go a long way," she said.

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