NADD - An association for persons with developmental disabilities and mental health needs

From the NADD Bulletin Volume X Number 6

Deceived, Disabled, Dejected, Dehumanized, Dismissed, and Dying: The Widespread Dilemma of MCS Disability

Toni Temple, Founder and President, The Ohio Network for the Chemically Injured

My name is Toni Temple and I am a non-traditional, self-appointed poster child. I'm "non-traditional" because I am not an adorable child with Shirley Temple curls standing on crutches that you might have seen growing up in slick March of Dimes or Polio Prevention ad campaigns. Heck, I'm not even a child - I'm 63 years old. And I'm "self-appointed" because the disease from which I suffer is not recognized or acknowledged by significant portions of the medical and health care communities. I am a victim of, and poster child for, Multiple Chemical Sensitivity (MCS). A better understood term would be chemical poisoning, but MCS is the name they gave us.

You may have heard about MCS but don’t understand what it is, or you may have been falsely led to believe that it is not a legitimate disability. To simplify, MCS can be caused when people are exposed to certain chemicals and toxins on a daily basis for a period of time or they have been exposed to a harmful substance in a major single exposure (e.g., pesticide application to their home or yard, new carpeting, treated wood deck or fence installation, remodeling chemicals, etc.). These exposures can harm the body by causing permanent sensitization to numerous chemicals and products used in daily life and can also cause other illnesses including cancer, developmental disabilities, and asthma. Reading my article may help you with your own health problems or those of your unborn child. Everyone can be affected by chemical exposures that are inhaled, ingested, or absorbed through their skin (see Toxicological Profiles in Resources section).

Those harmed by chemical exposures have included: Gulf War Veterans; Viet Nam Veterans; 911 Rescue Workers; nurses (exposures to latex and disinfectants including gluteraldehyde); farmers (pesticides); factory workers (heavy metals and solvents); the housewife (uses modern chemistry to decorate and clean her home), and ordinary people like you (who may have had jobs that exposed them to harmful toxins, took pharmaceuticals for other health issues, or just happened to be in the wrong place when a toxic event occurred). Toxins can be ingested, e.g., dyes, preservatives, pesticides, and other food additives.

I became permanently disabled with MCS in 1988. I learned how to survive by following my instinct and avoiding triggers (e.g., pesticides, petroleum products, perfumes) that cause me to have severe health reactions. When I joined an MCS support group I learned this health problem was international (Ashford, et al. 1995) and political, and that discrimination was the rule, not the exception. MCS was not “validated” by physicians who were uneducated about it (Schenk et al., 1996). That set the stage for families, employers, friends, and others to degrade and disbelieve those being harmed by toxins. I learned how to study toxicology and scientific articles out of necessity and took pertinent ones to my physician for review. One of these, the U.S. Department of Health and Human Services Toxicological Profile on Zinc, literally saved my life.

My MCS disability was caused by an exposure to zinc chloride being emitted from oxidized galvanized metal in my home furnace ductwork. I learned from the Zinc Toxicological Profile that zinc can replace iron in your body and cause dangerous iron deficiency anemia. The zinc apparently also mimicked iron in the CBC blood tests I had been given. I was not diagnosed with anemia until after I gave my physician the Zinc Profile and he decided to take a ferritin iron level blood test. It showed I was in imminent danger, and iron transfusions were immediately ordered for me.

MCS is only one of many illnesses caused by toxic exposures. Most diseases caused by these exposures take time to develop. However, MCS symptoms occur almost instantaneously upon exposure to a triggering agent (Miller, 1994). The immediate effects are similar to being placed under anesthesia and include: confusion, disorientation, drugged feeling, headache, short-term memory loss, slow mental response, imbalance, difficulty speaking coherently, and other disabling symptoms. Many times those with MCS also develop other illnesses in addition to their MCS. Is it any wonder those with MCS want to be and need to be understood and accommodated? Quite ironically, when accommodations are provided, those with MCS can feel relatively well.

Known toxins that disable and trigger reactions include pesticides (Reigart & Roberts, 1999) -- a category that includes disinfectants, herbicides, fungicides, and rhodenticides; petroleum, solvent, and gas exposures; heavy metals; and molds. Although it takes only one of these to disable, once MCS presents, minute exposures to any of these can trigger severe reactions. (MCS Definition, Multiple Chemical Sensitivity: A 1999 Consensus, 1999).

In addition to the short-term effects from chemical poisoning, there are also long-term effects, particularly when people cannot get away from every day exposures (e.g., exposures at the workplace, schools, or in their homes). Long-term effects include neurological problems and peripheral nerve damage (peripheral neuropathy); anemias (more than one type); diabetes; arthritis; chemical cellulitis; vascular disorders, including life threatening blood clotting; nutritional deficiencies; asthma; and sometimes even cancer.

From 5 to 15% of the U.S. population is affected by chemical sensitization in varying degrees (Miller & Ashford, 2004; Caress & Steinemann, 2003; Neutra, Kreutzer, & Lashuay, 1999; Vorhees, 1999; Meggs, Dunn, Bloch, Goodman & Davidoff, 1996). When you also consider that chemicals cause other diseases including cancer, birth defects, asthma, and Parkinsons, the percentages skyrocket. As a society, we have become careless and irresponsible about the production and use of chemicals. We have been lured into believing that there are “safe levels” of toxics and that additives and pesticides in our foods will not harm us.

“Experts” on health news shows and commercials have led us to believe that we are at fault for our health problems. They tell us we have bad genes, eat too much, and need to exercise more. They neglect to inform us that the addictive substances, dyes, preservatives, artificial sugars, msg, and other food additives store in our fat cells. We remain hungry and our health suffers because our bodies recognize and utilize only nutrients. The artificial ingredients in our food store in our fat cells instead, continuously poisoning us while we utilize our fat for energy.

It is shocking and inexcusable that most doctors have not been and are not being trained to recognize chemical poisoning in medical schools, including those for occupational medicine. Death from taking prescription drugs, as directed, occurs more and more frequently, and more have been permanently harmed. Toxicologists are appropriately trained and capable of recognizing how various toxins affect our health. However, they are not permitted to treat patients (unless they also have medical school training). As a result, many MCS patients are misdiagnosed and inappropriately labeled with psychological disorders while anemia, nerve damage, and other life threatening harm takes place. Having PhD toxicologists teach in medical schools would be a great start!

I firmly believe in the adage “Seek and ye shall find.” There is a cause for every health problem and disability. As a society we can fix some of the problems. But first we have to be responsible and appropriately educate ourselves, and then learn how to communicate with each other to find the solutions.

Resources

IEQ, Indoor Environmental Quality http://ieq.nibs.org

The Ohio Network for the Chemically Injured, www.ohionetwork.org

Toxicological Profiles are available at www.cdc.gov . Enter name of element or chemical and “toxicological profile” in search box on cdc website (e.g., Toxicological Profile Zinc). The toxicological profile for zinc is available at www.atsdr.cdc.gov/toxprofiles/tp60.html.

References

Ashford, N., Heinzow, B., Lutjen, K., Marouli, C., Molhave, L., Monah, B., et al. (1995). Chemical sensitivity in selected European countries: An exploratory study. Athens, Greece: LTD.

Caress, S., & Steinemann, A. (2003). A review of a two-phase population study of multiple chemical sensitivities. Environmental Health Perspectives, 111, 1490-1497.

MCS Definition, Multiple Chemical Sensitivity: A 1999 Consensus, Archives of Environmental Health, .54(3) May/Jun99

Meggs, W.J., Dunn, K.A., Bloch, R.M., Goodman, P.E., & Davidoff, A.L. (1996). Prevalence and nature of allergy and chemical sensitivity in a general population. Archives of Environmental Health, 51 (4), 75-82.

Miller, C.S. (1994). Chemical sensitivity: History and phenomenology. White Paper. {Special Issue} Proceedings of the Conference on Low-Level Exposure to Chemicals and Neurobiologic Sensitivity. Toxicology and Industrial Health, 10(4/5), 253-276.

Miller, C. & N. Ashford, N. (2001). Multiple chemical intolerance and indoor air quality. In J.D. Spengler, J.M.M. Samet & J.F. McCarthy (Eds.) Indoor Air Quality Handbook, Chapter 27.8. New York: McGraw-Hill.

Neutra, R., Kreutzer, R., & Lashuay, N. (1999). Prevalence of people reporting sensitivities to chemicals in a population-based survey. American Journal of Epidemiology, 150, 1-11.

Reigart, J. R. & Roberts, J. R. (1999) Recognition and management of pesticide poisonings, p. 5. Washington, DC: U.S. Environmental Protection Agency. Retrieved from www.epa.gov/oppfead1/safety/healthcare/handbook/handbook.htm

Schenk, M., Popp, S.M., Neale, A.V., & Demers, R. Y. (1996). Environmental medicine content in medical school curricula. Academic Medicine. 71 (5):499-501.

Vorhees, R. (1999, Feb. 8). Results of analysis of multiple chemical sensitivities questions,1997. Santa Fe, NM: Behavioral Risk Factor Surveillance Systems, Office of Epidemiology, New Mexico Department of Health.

For further information, please contact Toni Temple at ohionetwork@netzero.net or by mail at P.O. Box 29290, Parma, Ohio 44129.