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A Real Disease, MCS

By Iris Harden Brooks

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Remember, just because you don't understand something doesn't mean it doesn't exist. If someone mentions to you they have an environmental illness, sick-building syndrome, multiple chemical sensitivity, mold poisoning, take them seriously.

Most of us who suffer from such illnesses already feel hesitant to talk about it because people often look at us like we have a spot on our forehead. We are making a great big deal out of some little allergy! Nothing could be further from the truth.

The Social Security Administration, The American with Disabilities Act, EPA and Dept. of Housing and Urban Development and other agencies recognize multiple chemical sensitivity (MCS). Over 36.5 million Americans are chemically sensitive, and more than 5.2 million are at risk of losing their jobs as a result. Yet this most devastating illness is poorly understood or accepted in the real world.

It's hard to explain this affliction in a way that others can really understand how serious it is. It's chronic and can be life-threatening. We have to be very aware of our surroundings and need people to respect our disability the same as if we had any other illness. We are real people with a very REAL illness.

Most of us end up with MCS as a result of a single exposure to a highly toxic chemical or long-term chronic exposure. I have a good friend with MCS due to an exposure to toulene. Yet in our case, we were exposed to mold and dangerous mycotoxins: trichothecene and aflatoxins.

As we inhale, absorb and ingest these poisons our whole body is affected. Our immune system breaks down, our cells become almost dormant, and we have multiple organ damage. At this time, we know of no cure.

The effects of MCS are never identical in any two people. Our genetics and bodies are all different. There is no exact pattern.

My physician said MCS is well recognized in the environmental community as the spreading phenomenon. The initial chemical triggers a biological reaction mechanism which causes the body to react to a wide range of substances that never seemed to bother us before. These can be air fresheners, pesticides, cleaning products, perfumes and so many others.

Sometimes we can't predict how we'll react to what. Often we don't even know what it was that caused the reaction. But we know we got around something that had a dangerous chemical in it.

We often appear to look perfectly normal. We are repeatedly told, "but you don't look sick!" People, often even our family and friends, feel our symptoms are highly exaggerated. Sometimes we get an immediate reaction. Other times we seem to suffer a delayed reaction to an exposure.

What others might perceive as a minor exposure to inks, paints, smoke, perfumes, carpet cleaners, exhaust fumes, electrical fields, etc. can steal all quality of life for days or even weeks. We can even lose our life! Obvious and immediate reactions can be headache, nausea, pin-hole pupils, seizures, muscular pain, mental confusion, slurred speech, loss of voice, lack of coordination, etc. Delayed reactions can include longer-term neurological impairment, respiratory malfunction, bloodshot eyes, choking, insomnia, and severe chest pain, etc.

With very few physicians who understand this illness and many who even deny its existence they will try to treat symptoms with antidotes that can further break down our immune system and do us no good at all.

The cycle continues. Our body gets weaker and weaker. It gets where it takes smaller and smaller exposures to cause an adverse reaction. We become even more hypersensitive. It seems like everywhere we go something makes us sick. We have no control over it.

We stay in a state of turmoil. One day we appear halfway normal, but then out of nowhere we have are debilitated. We did not choose to have this illness and we know it's hard for others to comprehend. We couldn't even understand it ourselves until we experienced it taking place over and over again. Many of us had no idea what was happening to us. Our sense of smell is so keen...

All we ask is to show us the same respect you would show others who are disabled or suffer a chronic illness. If we tell you certain products and chemicals bother us, please know that we have already seen what they do to us. We never forget the pain inflicted by these chemicals.

We are being straight with you. We really can't tolerate certain things! If you really care about us, please take us seriously! I know in my heart I would do that for you.

Some of you may somehow think if you tell us you're not wearing scented perfume or hide the fact that Pest Control just sprayed your house with pesticides that we won't know the difference. We'll probably be okay. It doesn't work that way. It's not the smell that makes us sick. It's the biological action of the chemicals on a now sensitized brain and body.

You really are playing with our life when you don't try to avoid using these products around us. We know the world is not going to change for us. Yet we don't want to have to live in a bubble. We want to be around the people we love. We want to be more than a mere existence. Our hopes and dreams still live within our hearts. If you really care about us, please realize how serious this issue really is.

  Dealing with Health Difficulties

  Multiple Chemical Sensitivity (MCS)

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