The Chemical Hypersensitivity Brochure for My Friends
by Stephanie Miller and her Mom
I have written this information to help my friends and family have a better understanding of the illness, Multiple Chemical Sensitivity (MCS), that I am experiencing. I sincerely hope that this will help you to better comprehend a subject that is not (yet) well understood by many people, including the sufferers and the medical community.
"For those of us with MCS, we are the 'canaries in the mine.' Those of us who call ourselves canaries are just the weakest link in the human chain. We are the first to fall—the most susceptible. Coal miners carried canaries when they descended the long shafts in their mines. More sensitive than humans, the sweetly chirping birds responded to toxic gases by falling silent or dying. When the canaries died, the miners still had time to flee to safety—away from the odorless, invisible gases that would do them harm. Many a canary gave its life—serving as an early warning bell for the miners." – Freeman R. Bekins
Answers to the 13 Most Frequently Asked Questions:
1. What illness do you have?
I have Asthma and Multiple Chemical Sensitivity (MCS.) Later in this brochure I will explain Asthma and MCS.
2. What Environmental Exposures will make you react?
Some fragrances from some perfume, hair spray before it dries, cologne, and air fresheners cause me to react. Unfortunately, I have not been able to find cleaning supplies that cause me to react.;-) I am still looking.:-o I do however make a special attempt to avoid any chemical or strong smells when I am having any type of difficulty.
There are some other environmental factors that I also react to. My worst two things after fragrances are cats :-( and ragweed. I really love cats, so it is hard to be so allergic to something that I just want to pick up and cuddle. Sometimes I will take the chance. I can take some medication and hope for the best. Sometimes I will not react. Sometimes I will beg to get in the closest bathtub just to get that cat allergen off of me.
I also have exercise-induced asthma. I sometimes have gotten an asthma attack from exercise, not pretreating or maybe the combination of exercise and cold weather.
3. What Kind of Reactions do you have?
I get several different types of reactions. I cannot predict which reaction that I will get or how severe the reaction will be. But I at least know what my different reactions are. I get watery, itchy eyes. That is so bad. I also can get headaches, asthma, real tired, and I get in a bad mood.
4. Do you have any early warning signs of a reaction?
Sometimes I feel tight, but my peak flow is still up. Sometimes I am reacting and someone else hears me and tells me that I am having an asthma attack—I am unaware. Please rest assured that when I am having a moderate to severe asthma episode, I do know that I am having asthma.
5. What do you do when you feel an attack coming on?
I use my peak flow. I see where it is at. If it is in the high yellow zone, I will use my puffer. If it is in the low yellow Zone or the red zone, I use my nebulizer.
6. Do You get sick often?
When I was little, my mom and I did not know much about Asthma and MCS. I would miss a lot of school. I did not know how to protect myself. Now I am more knowledgeable about what causes me to have problems and how to avoid those things. I do not get sick as much.
7. Is MCS contagious?
You cannot get MCS from another person. MCS is developed in one of two ways. One way is a low-level exposure over a long period of time. The second way is the way that I contracted it. It was through a one-time, high-level exposure of chemicals. When I was 7 years old, I was in a perfume fight. We all had bottles of perfume that we sprayed on each other. It was in the dead of winter, so the house was locked up tight. My immune system was already compromised by my asthma. The theory is that the sudden large exposure was more than my defective immune system could handle. Now when I come in contact with the chemicals that were in the perfume the night of the fight, I will react. I am not sure which perfumes we used. It was years later that we put together the connection of the perfume fight and the MCS relationship. I do not know which chemicals that I will react to, and I do not know the type or severity of reaction that I will have.
8. I understand that you have asthma and MCS. How do you go shopping, to restaurants or church? Why are you only concerned about the school environment?
I have been asked this question a lot. My answer is very simple. Anywhere I go, if I run into a trigger that is causing me problems, I just move. If moving is not good enough, we will leave. It has happened in church, restaurants, and shopping. It is not a very big deal. School, however, I cannot just get up and disrupt my education when I am exposed. Like any other person, it is vital that I spend as much time in class as possible. I cannot just leave my educational experience.
9. Are there other people with MCS?
Yes, more than you think. Approximately 15–30% of the population has this illness to some degree; obviously, not all of them are debilitated by it.
10. What happens to your body during an asthma attack?
During an asthma attack, there are primarily three things that happen. The first thing is that the muscles around the bronchi or bronchial tubes start to spasm. This causes the lungs to gets squeezed into smaller air passages. The body is quick to react to the spasm. The inner portion of the bronchi and bronchial tubes start to swell from the muscle spasm. The lungs then attempt to soothe the swelling by producing mucus. The mucus, however, usually produces more harm than good. The lungs' air passages are already reduced due to the muscle spasms and the swelling. The mucus caused the already small airways to clog up. The coughing is the body's attempt to relieve itself of the mucus that it has created. The wheezing that is common for an asthmatic is caused from the air rushing through a reduced airway.
11. Does Asthma lead to other diseases?
Yes. If not aggressively treated, asthma can lead to emphysema. In addition, the medication that I take to control my asthma can cause secondary medical problems. The number of x-rays that I take can eventually lead to cancer. Finally, the worse thing about asthma is that it could kill me. I have been close to death before from asthma. During that particular attack, Jesus came down to me and my mom. Mom did not see him. He sat by her and held her hand. He told me not to be afraid to die. From that time on I have not been afraid to die. Jesus promised me that it would be OK.
12. Is asthma always diagnosed in childhood?
No. Asthma can be diagnosed at any time in anyone's life. Some people are born with asthma; some people develop it in childhood. I developed mine when I was 5. Some people will develop asthma as a result of their occupation. Examples of these are chemist, firefighters, doctors and nurses. The mortality and morbidity rate for asthma is at an alarming increase. Asthma can strike anyone at anytime. For instance, 95% of perfume contains a chemical called toluene. This chemical is known to cause asthma in otherwise healthy individuals.
13. Will you outgrow your asthma?
The American Lung Association has revised it's opinion on this question this past spring. It is now believed that 25% of asthmatics that are diagnosed with moderate to severe asthma will outgrow their asthma. This is a drastic reduction from previous projections. My asthma falls in the moderate to severe range. The best that I can hope for next to out growing my asthma is to give my body time to heal. It takes a year for my lungs to fully recover after a major asthma episode, like the one at Easter. It is extremely important for me to avoid my triggers as much as possible. I do not want to live in a bubble; however, I do want to LIVE.
The current statistics on MCS are showing that about 25% of all people who contract this illness will recover, at least to a close approximation to their life before becoming chemically hypersensitive. Avoiding my triggers will give my body time to heal. It is through this healing and my body's progression through childhood that I hope one day I will be able to become a lot less sensitive to my environment. I do know that if I do not avoid my triggers that my condition will deteriorate. I will become more sensitive to my world.
The Rose in my Garden—a Mom's Perspective
(NOTE: This section was adapted from "Raising Your Spirited Child" by Mary Sheedy Kurcinka.)
Stephanie is like a rose in my garden. She needs more attention. Throw a little water on the other flowers, and they will grow. Not the rose—it needs special treatment. It has to be pruned and guided in its growth.
Other flowers can be plucked, pulled, and mauled by a preschooler and still last for weeks on the dining room table. If you treat a rose roughly, it will wilt in your hands or stab you and make you bleed.
But there is not another flower like the rose in my garden. Its rich perfume fragrance titillates my senses. Its satin soft pedals tickle my fingers. Its blooms are so vibrant it stirs my soul. Stephanie is like a rose. She needs special care. And sometimes you have to get past the thorns to enjoy her beauty.
Love my special daughter for who she is and what she is capable of. Let her make you laugh. Let her share with you how she sees the world. Allow her to enrich your life. Because she is more, she will make you more.
A Few More Questions
1. How Can I best help you?
Be as scent-free as possible! Even though some of the requests MCS suffers make may seem extravagant to you, they are vital to us—I wouldn't ask you to go through so much trouble if it weren't so critical to my health and comfort. I don't want to live with this any more than you do, so it might be helpful for you to know that I am only asking you to make special accommodations while I am around. If you think adjusting a bit for a visit or an education is difficult for you, imagine what it is like to live with this 24 hours a day, every day.
Also, despite your best intentions, you can't "fix" me. I recognize that your suggestions are truly a way of saying that you care, but I have been dealing with this problem for a long time and have had good information from physicians, support group members, and others going through the same situation. For the most part, I feel confident that I am handling the problem with the most current knowledge available within the MCS community. What you can do is to read literature to learn more about this illness (see the "MCS Resources" page), trust me to make good decisions for myself, and ask about other important things going on in my life. Dwelling on this illness is a drag for everyone, and while I will gladly answer specific questions, I'd really rather get on to bigger and better topics.
Please understand if I refuse to enter a building or room or if I need to leave some place abruptly. Don't take this personal. I have to look out for my health. An environment that seems fine to you may be toxic to me. I will usually be able to tell very quickly if I will be able to stay in a particular location. If I detect any smoke or chemical odors that bother me, I will (hopefully) leave ASAP. At times I will need help in recognizing that I am not okay. Please get me to where there is fresh air. If my eyes are reacting I will need water to wash them out.
2. How can I make sure that I am scent-free? What products are available, and where can I get them?
Obviously, there is a limit as to how scent-free any of us can be, but with a few easy (and surprisingly inexpensive) adaptations, you should be fine. Keep in mind that what works for me may not work for someone else with MCS. (See the "Guidelines for Nontoxic Living" page for suggestions.)
3. What is Multiple Chemical Sensitivity (MCS)?
Multiple Chemical Sensitivity (MCS) is a disorder caused by exposures to the environment. Individuals with MCS can have symptoms from chemical exposures at concentrations far below the levels tolerated by most people. Symptoms occur in more than one organ system in the body—such as the nervous system and the lungs. Exposures may be from the air, food, water, or through skin contact. As MCS gets worse, reactions become more severe and increasingly chronic—often affecting more bodily functions. No single widely-available medical test can explain the symptoms. So far, the quantitative EEG is the most reliable diagnostic test.
In the early stages of MCS, repeated exposures to the substance that caused the initial health effects provoke a reaction. After a time, it takes less and less exposure to this or related chemicals to cause symptoms. As the body breaks down, an ever-increasing number of chemicals—including some unrelated to the initial exposure—are found to be triggers.
MCS affects the overall health, feeling, and well-being of those with the disorder. It typically impairs many bodily functions, including the nervous system and digestion. Each individual affected by MCS has a unique set of health problems. Many affected people experience a number of symptoms:
- flu-like symptoms
- asthma or other breathing problems
- dizziness, nausea
- increased sensitivity to odors
- mental confusion
- bloating and other intestinal problems
- fatigue and depression
- short- and long-term memory loss
- chronic exhaustion
No one knows for sure what causes MCS. Many of the chemicals which trigger the symptoms are known to be irritants or to be toxic to the nervous system. One especially harmful group of chemicals are known as "volatile organic" which readily evaporate into the air at room temperature. Permitted airborne levels of such contaminants can still make ordinary people sick.
Both the US Department of Housing and Urban Development (HUD) and the Social Security Administration (SSA) have recognized MCS as a disabling condition, although it is very difficult to get a diagnosis from a physician, due to their lack of training and lack of time/interest in investigating the problem. Also, research efforts are often financed by the industries which benefit from the proliferation of the chemical.
(The contents on this page were adapted from a booklet produced by the Multiple Chemical Sensitivity in the Workplace Task Force, and the NY Coalition for Alternatives to Pesticides, and a dear internet friend, April Lang, RA, North Carolina.)