When Marny Turvil of suburban Evanston gets a whiff of certain cleaning products, fabric softener or gasoline fumes, she feels depressed, irritable, tired and foggy-headed.
At least one doctor has ridiculed her self-diagnosed hypersensitivity to chemicals. Friends wondered about her mental health. And once, while on an airplane, a perfumed flight attendant gazed at the respiratory mask and snarkily asked, "Where are you going, Mt. Everest?"
Such is life with a disorder known as multiple chemical sensitivity, or MCS, a confounding illness that is not officially recognized by the U.S. medical establishment but has very real symptoms for an estimated 12 percent of the population.
Though a controversial new branch of medicine called clinical ecology (or environmental medicine) has sprung up to help treat people who are hypersensitive to chemicals, the disagreement over whether the condition actually exists has provoked a schism among physicians and made it difficult to find care and research funding.
The theory behind the disorder is that vague symptoms such as fatigue, depression, memory loss, headaches, confusion and difficulty concentrating are triggered by either one large chemical exposure such as a pesticide application or low-level exposure to everyday chemicals in the environment. But so far science hasn't been able to link the causes and symptoms that patients describe.
"People who don't have it think we're crazy, making it up or hypochondriacs because (the triggers) are products that people are around all the time but have no problem with," says Turvil, a pediatrician who recently retired from practice to open Health Green Goods in suburban Evanston, a store caters to those with environmental sensitivities.
MCS, which has been described since the 1940s, has been discounted as an organic disease by several groups, including the American Medical Association and the American Academy of Allergy, Asthma and Immunology. It's often confused with an allergy because many of the reactions - including headaches, fatigue, general malaise, swelling and breathing difficulties - can be the same as those in delayed-type allergic reactions to foods.
"We have no real evidence to believe those things, at least in mainstream medicine," says dermatologist Andrew Scheman, director of the North Shore Center for Medical Aesthetics, who specializes in contact allergies.
Still, MCS is recognized by the National Institute of Environmental Health Sciences as a "chronic, recurring disease caused by a person's inability to tolerate an environmental chemical or class of foreign chemicals." The Americans With Disabilities Act includes MCS as a disability.
One problem is that MCS is not clearly named or defined. Since 1996 it has been officially called "idiopathic environmental intolerance," but it has also been labeled environmental illness, toxic injury, chemical AIDS, 20th century disease, total allergy syndrome, chemophobia, sick-building syndrome and toxicant-induced loss of tolerance.
The symptoms, which can affect the central nervous system or cause respiratory or gastrointestinal problems, vary depending on the person and the trigger. One study of 20 patients in the journal Clinical Toxicology showed that mold, indoor volatile organic chemicals and ink printers were thought to cause symptoms. In that study, a 30-year-old woman said she had migraines and dizziness from household cleaners, a 47-year-old man complained of back pain from model rocket glue and a 59-year-old woman experienced weakness and tremors from toilet tissue. But after evaluations, the researchers could not find a toxic cause in any of the cases.
Chemical sensitivity also overlaps with other "real" diseases, including chronic fatigue syndrome and fibromyalgia, making it impossible for someone to know which one is causing the problem. Some people believe it's a "sick building" phenomenon; other theories on the mechanism include allergy, a conditioned response, impaired biochemical and neurochemical pathways, psychological or psychiatric illness, a psychosomatic condition or altered sensitivity of the nervous system.
The only "cure" is to avoid exposure, which means limited access to public places, including libraries, doctor's offices, grocery stores and churches. Some people also make drastic changes such as removing wheat gluten, yeast and dairy from their diets or avoiding all processed foods, which contain trace amounts of processing chemicals.
Turvil, a mother of two, figured out she had MCS about five years ago, primarily because her mother also suffers from it. "In typical mainstream fashion I thought she was nuts. Then I started having clear symptoms."
The realization forced her to overhaul her life. She cleaned out her house, began eating a plain diet of meat, vegetables and fruit, and stopped going out in public. Finally, she even left her job as a pediatrician because if she spent 30 minutes in an exam room breathing in chemicals from fabric softener from a patient's clothing, she'd be knocked out for the day.
"People will discredit things that threaten their well-being," says Turvil, who suspects the increase in chronic childhood illnesses is due to chemical exposure. "To be told products you use every day are full of dangerous chemicals is a very threatening thing." By Julie Deardorff
Chicago Tribune
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