Multiple Chemical Sensitivities, Part One
Karen Schaefer- Twelve years ago, Toni Temple was the chief administrator for three midwest agricultural manufacturers. But within a few months, her life changed forever.
Toni Temple- I lost my job, my house, my home for my whole life, all my furniture, because I became allergic to it. I couldn't eat, I couldn't work, I lost my health insurance, because the company changed insurance companies. And here I was -- one minute doing fairly well and the next minute homeless and poverty-stricken.
KS- Toni had no idea what was wrong with her. But she began to notice that certain things made her skin break out, made her sick to her stomach, and even made it hard for her to breathe.
TT- I was working with chemically-treated paper and I was noticing that it would be on my fingertips and if I would touch my face I would start breaking out. Just a major series of things started happening.
KS- Sometimes the symptoms would last for days and more than once put Toni in the hospital. She went to more than 25 doctors before she was diagnosed with Multiple Chemical Sensitivities or MCS. Ever since, Toni has been learning to live with her condition..
TT- You learn by trial and error what you can and can't do and it's always a challenge. I guess what I can say about this disability is that it always changes, so you don't get bored with it (laughs) .
KS- Even at home Toni wears a surgical mask to filter out pollutants her home ventilation system doesn't stop. Her computer and printer are vented to the outside. She must eat organically-grown food with no preservatives or dyes and drink bottled water. And when she leaves the house, she must wear a respirator to breathe..
TT- I go where I have to go. I have to get food and groceries. I pick the times of day when they're not busy, when they're not cleaning. I have to go to the hospitals and I have to go to the doctors. It's not a real exciting life.
KS- While Toni Temple is a veritable poster child for people with MCS, her case is extreme. But because chemical sensitivities are so disabling, for the last ten years doctors have been paying more attention to the condition. Dr. Kathleen Fagan is director of Occupational Health at Community Health Partners Hospital in Lorain. Dr. Fagan says no one knows for sure what causes MCS.
Kathleen Fagan- It's true, we don't actually know the biologic mechanism of MCS. And there's still a lot of research going on to try to figure that out and there's certain theories about whether it's mainly a psychological problem or whether it's mainly a physical problem or a combination.
KS- Dr. Fagan says symptoms might include headaches, respiratory problems, dizziness, confusion, nausea, disorientation and weakness or pain in arms or legs. She says what distinguishes Multiple Chemical Sensitivities from other toxin-triggered ailments like asthma and allergies is that more than one organ system is affected. And that makes diagnosing MCS difficult.
KF- The first thing is always to look for treatable, known diseases, so that you rule out anything you can actually do anything about. It certainly is exposures in the air that they breathe that seems to set off the symptoms, and a lot of it's up to the person to kind of figure out what types of things seem to bother them and to try to avoid those things.
KS- Once developed, MCS is a lifetime disability. No one knows exactly how many people have the condition. But a 1996 California study estimated that 15% of all Americans have some kind of chemical sensitivity. Dr. Fagan believes helping people with MCS reduce their exposure to harmful chemicals could help everyone lead healthier lives. Toni Temple would agree. She holds no one to blame for her disability. But Toni believes that ignorance -- on the part of doctors, employers, and even family members -- is the primary foe in the fight to help people with MCS lead more normal lives.
TT- I don't think anyone really, intentionally started out to do anything to us, but now that it's happened, I think liability is a big concern. And so we have to re-educate ourselves to make wiser choices.
KS- Toni Temple is now President of the Ohio Network for the Chemically Injured, one of many organizations across the country that provide support for people with MCS. Like others, her group also advocates for more research and broader education about the condition. It's in part because of people like Toni that this year -- for the first time -- the federal agency in charge of access for people with disabilities will publish a technical assistance manual for healthier building design. In Cleveland, Karen Schaefer, 90.3 WCPN, 90.3 FM.