My Story

Some people have asked what triggered my interest and motivation in putting up this web site. For those that want to know, here is my story.

In 1988 I was working as a dialysis nurse in a small town. My life was pretty normal, juggling home, kids, and job. Other than a few allergies, I was healthy. I had no idea that my life would soon be changed forever.

It was a pretty normal Saturday at work. We had two shifts of patients and it was always busy when taking the first shift off the dialysis machines and putting the second shift of patients on. We cleaned the chairs between patient's use with a general purpose disinfectant cleaner applied with a pump spray bottle.

Almost as soon as I sprayed the solution I could not get any air in. I quickly ran outside to get some fresh air. In just a little bit I could breathe again, but I was wheezing badly. I had no history of asthma. In a few more minutes my breathing returned to normal. I went back inside to work. It was a Saturday and there was only one other RN on and I knew I could not leave work. I think the episode had scared her about as bad as it did me.

Once inside I had a little chest tightness, but nothing severe unless I got near the cleaning solution. Just walking by a cloth damp with the solution would set me off wheezing. So needless to say we did not use the cleaner the rest of the day.

I later found out that the brands of cleaner had been changed and this was the first time I had used this brand. When checking the labels of the two products I found the one I reacted to contained fragrance and the other did not. All other ingredients were the same. From this I figured the fragrance in the product must have been what triggered the breathing problems.

My employer accommodated me and switched back to the other brand of cleaner. They used the existing supply on my days off so I would not be exposed to it. If I had to go by work for any reason on my days off I could tell which cleaner was being used. Though I could not detect an odor, I would have chest tightness and wheezing within several minutes of entering the building.

At first the cleaner was the only thing that caused me problems. Gradually I noticed I was having problems with other fragranced products. I never knew what would cause a problem. There was no connection to odor or even the intensity of the odor. Some things that had little to no odor would cause severe problems while some things very strong caused no reaction at all.

Again my employer accommodated me. If a patient had on a fragrance that caused me problems I would switch assignments. Outside of work I started having to avoid the detergent aisle in the grocery store. I could not be in crowds without something causing me to wheeze. It became difficult to sit through church because invariably someone had used a product that caused me to start wheezing.

I still did not realize the seriousness and potential outcome. Once away from the trigger, my breathing would quickly return to normal. Often I would complete whatever I was doing despite the wheezing because I knew it would resolve once away from the fragrance. I started noticing it was taking longer to resolve. Exposures that used to resolve in just a few minutes were taking longer and longer to resolve. After sitting through an hour of church service it would take an hour or so for my breathing to return to normal. I would also be fatigued and felt bad the rest of the day.

I made an appointment with my allergist after I ended up with persistent wheezing that just would not clear after an exposure. It was not severe; it just would not go away. He prescribed asthma medications and gave me an albuterol inhaler to use as needed after exposures. Though I told him perfumes and fragrances made me wheeze really badly, he did not seem overly concerned.

The asthma medications helped the breathing, but the side effects made them very difficult to tolerate. I had trouble sleeping and was very nervous from taking them. The doctor told me to reduce the dosage, which helped some but did not eliminate the side effects. They did clear up the persistent wheezing and my breathing returned to normal. I would use the albuterol inhaler when there was an exposure and it would quickly clear up the wheezing.

I had taken my daughter to the allergist for allergy testing. The doctor and I were discussing the results when someone walked by that had on a fragrance that I reacted to. I immediately started wheezing severely. The doctor was very concerned about the rapid onset and how severe it was.

Over the next few months different combinations of medications were tried with varying results. The combination that worked best was a steroid inhaler and an antihistamine. An albuterol inhaler was to be used for acute episodes. Even this did not eliminate all symptoms, but it did enable me to do most things without severe problems.

In 1990 I stopped working as a nurse. My father was ill with cancer and my husband was getting established in his own business. I wanted to be available to help care for my father and help my husband with his business. I had full intentions of returning to nursing when things settled down a bit.

The steroid and albuterol inhalers started making me cough every time I used them. The irritation and coughing got so bad that the inhalers caused more harm than they did good. I had to stop using them. At the time the steroid was not available in non-aerosol form but the albuterol was. I was very surprised to find once off the steroid inhalers the underlying sensitivity had increased. Without the steroids the antihistamines were of very little benefit. I did not tolerate the usual oral asthma medications because of side effects. The doctors had little else to offer.

I continued to use the non-aerosol albuterol for acute attacks. Upon the advice of my doctor I also carried an epi-pen. I started having respiratory infections that would not resolve without antibiotics and steroids. These usually were the directly after an exposure to fragrances. I realized staying away from fragrances was essential if I did not want to be sick. So avoidance became my primary treatment plan.

In early 1992 I decided I wanted to return to nursing. I applied for a job at a long-term care facility. I was to work night shift on weekends. I felt this would minimize my exposure to visitors and fragranced products. When I went for orientation there was someone with something on that caused a severe reaction. I realized then that I would probably never be able to work in a public setting.

This was very difficult to deal with. Being a nurse was all that I could ever remember wanting to do. I had worked very hard to become a nurse. I had planned to return to college and get my BS and then Master degree in nursing. I knew now that that would never happen. It was a very low point.

Then I started considering the possibility of desensitization through allergy shots. I checked with the allergist only to learn that since it was not known what I was reacting to shots were impossible. So I decided I would try to find out what it was that triggered the reactions.

I started calling companies whose products I reacted to. They refused to give me any information because it was trade secrets. I then pinpointed two products from a company, one that I reacted to and one that I didn't and asked if they could tell me what was different in them. Again they refused to give me any information. I asked would they give the information to my doctor and again the answer was no. I even called the FDA to see if I could get information. I was told the companies did not have to give this information, even to the FDA. I was pretty much at a dead end. I did not know how to find the information I needed or even know where to start looking.

I developed other symptoms besides the respiratory ones. A couple of hours after an exposure I would have muscle and joint aches, general malaise, and sometimes even a low grade fever. I sometimes would wake up in the night wheezing after I had been exposed earlier in the day. I curtailed my activities even more to avoid exposures. Three predictable scenarios had developed.

Direct exposures would cause immediate severe asthmatic reactions. If exposure was brief these episodes resolved quickly once away from the trigger with minimal residual problems.

Exposures lasting 5- 15 minutes would cause severe bronchospasms with subsequent severe coughing and copious mucus production. Effects would last the rest of the day and resolve over night.

Very low levels of exposures such as the amount found in the air of a store or public area that lasted several hours would cause gradual decreases in peak flows, persistent bronchospasms, flu-like symptoms, and rebound attacks. The symptoms from these type exposures would often persist for several days and usually required a trip to the doctor and medication before they cleared.

In February of 1995, I got online access. For the first time I found others that had adverse effects from fragrances. Many of these people had been diagnosed with MCS or Multiple Chemical Sensitivity. While they affected by many chemicals, I seemed to be affected by a specific chemical. Many of the types of symptoms they had were similar to what I experienced.

Anywhere there was any site on perfumes, asthma, or allergies I would write a note and inquire for information. I learned to do online searches and learned as much about asthma as I could. I started finding information on "Occupational Asthma" that pretty much described my reactions. I read all the information I could find. I quickly learned that you had to sift through information to gather what was useful and what was not.

A chemist that worked in the fragrance industry answered my inquiry and offered to help me figure out what it was in fragrances that made me ill. He told me to check my reaction to four specific perfumes. I did this, two I reacted to and two I did not. He said he would start with the most common chemicals first. He sent me "smell strips" that had been dipped in the chemicals. He sent a couple the first time and I did not react to either. He then sent about eight more.

I went to my family doctor and he performed a simple challenge test. Since I reacted so rapidly it was simply a matter of taking a "whiff" and see if it triggered the asthma symptoms. Out of the strips I only reacted to one. The reaction was instant, by peak flow rate dropped by a third. I was thrilled. I had now pinpointed the chemical that caused the problem.

I set up an appointment with the allergist to inform him I had found the chemical I reacted to. I was very disappointed to learn there were no desensitization shots for chemicals. I decided to check with other doctors to see if they knew of available desensitization. Though information I found online, I contacted several doctors that specialized in either occupational medicine or asthma. They all told me pretty much the same thing. There was little to be done except for supportive treatment for the symptoms and avoidance of exposure was essential to prevent the development of lung damage and a chronic asthmatic condition. I had little choice but to accept this.

By this time I had collected considerable information about fragrances. I realized that many other people were also adversely effected. The thought kept occurring to me that if I could become sensitized others could too. There simply was not enough research on the chemicals and combinations of chemicals in fragrances to be sure they were safe. It was difficult for those that had adverse effects from fragrances to provide objective data to support this was a real problem. There simply was not enough information available. And what information that was available was often difficult to obtain.

So I decided to put up a web site and gather as much information as I could to put on it.

Maybe … just maybe someone else with the knowledge and resources would see this as an important health issue and the needed studies would be done.

 

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