EHN's site is deliberately kept "fancy-free" so our EI/MCS/EMF community members can more easily use it ... and I can more easily handle the workload. I am not a "computer expert."
For those of you who feel you must see credentials before believing what you see on a website: I'm a wife, mother, grandmother and formerly gainfully employed. I earned an AA, while working and raising three kids. I understand that an AA in this day and age means little, but it means a lot to me. My favorite studies included Political Science and Anthropology. I was asked to join and elected to EHN's board in the mid-90s and have served since -- the past few years as its president.
When I was forced into early retirement, at age 60, I vowed to self to make as much good information available to the public as was humanly possible for me. Why? Because I feel YOU have a RIGHT to know. And, frankly, I believe that hand-in-hand with that belief is the one I also hold dear: Those who know have an obligation to inform. Accurately. With no vested interest.
EHN's website is brought to you with that spirit: YOU have a right to know; I have an obligation to inform. I feel our government agencies also have an obligation to inform the public -- the very public they are charged with protecting. However, as the saying goes, money makes the mare go and industry has plenty of money which it spends lavishly to keep the public from knowing the truth. That you'll have to get from many sources, EHN's site is but one little source of information.
This website is my attempt to bring you valuable information provided by many excellent doctors, researchers and other experts and folks who share our belief that there's more than meets the eye (on labels) when we purchase our modern consumer products. We are indebted to all of our reputable, reliable, trustworthy doctors and researchers for making their credible findings available via the Internet.
One excellent source of information on the toxicity of some of our modern products, that springs immediately to my mind is, Anderson Laboratories, Inc. (http://www.andersonlaboratories.com/.) The Andersons are known for their studies on the adverse effects/events suffered by mice when breathing air polluted by the very products that we have unwittingly welcomed into our lives. (See: Published research reports, video tapes, booklets http://www.andersonlaboratories.com/alweb23.htm.)
Getting around EHN's site
Near the top of HomePage (www.ehnca.org) you will find the very important disclaimer and a couple of links to pages I feel are very important, followed by a series of QuickClicks. Simply click on the word or phrase in the QuickClicks section to get to the information available from EHN's site.
For example:
- Access, a click on it -- or Take Heart! -- will bounce you right out to information on access/accommodations that already are in place and working for workplaces, schools (all ages), healthcare facilities, places of worship, .... Be sure to study this page, as items up under "Hospitals" could easily serve someone's needs for their own workplace or school. And the information by Seattle's English Country Ball under DANCE, could serve everyone, in all settings, very well.
http://www.ehnca.org/www/ehnhompg/takheart.htm
- Who says, "Avoid fragrances!"? The AMA and the ALA have -- just two of an increasing number of organizations and astute people. A click on Avoid Fragrances will take you to a list of august bodies who have told people living with asthma, rhinitis, migraines, ... to AVOID fragrances. Of course, as sound as that advice is, with the ubiquity of our modern scented products, it is impossible to follow . . . and thus far, people experiencing adverse events due to second- and third-hand fragrance product exposures are ignored. http://www.ehnca.org/www/ehnlinx/a.htm#AVOID
- Need information regarding toxic chemicals found in modern synthetic fragrances? Then click on FDA Petition --http://www.ehnca.org/www/FDApetition/bkgrinfo.htm.
From FDA Petition, link out to Analyses and to Product Label. And, please, take time to write the FDA if you or your children suffer first- or second, and yes, even third-hand negative reactions to modern, synthetic fragrances. Just reference "Docket Number 99P-1340." Contact info available at the top of the FDA Petition page. (You'll find more info on the FDA Petition, below.)
- Have you wondered, What's an inert? Inerts aren't what you think they are when reading a pesticide label. Interested? From QuickClicks, a click on Inerts http://ehnca.org/www/ehnlinx/pestcide.htm#Inerts takes you to that section of EHN's "Pest" Mgt. & Pesticide Info pagehttp://ehnca.org/www/ehnlinx/pestcide.htm. Do remember that the pesticide labeling word "inert" is very misleading. "Inerts" can be even more toxic than the couple of toxins you are allowed to know about through pesticide product labeling. Also, know that pesticides are fragrance products. Synthetic fragrance formulations and "inerts" are protected by trade secret laws -- in pesticides, it's known as "proprietary information." Great for the industry. But your right to know is seriously compromised. And lest you think your media give you the straight story, think again.
With WNV (West Nile Virus), TV news stations across the country are pushing the pesticide industry's products containing DEET. They have time to show it being sprayed on the arms of children (at least that's how it looked to me when viewing a local channel), but they don't take the time to give their viewers the cautionary statements, such as: WASH OFF AS SOON AS YOU COME INDOORS. Or, DO NOT USE UNDER CLOTHING. Another important bit of advice that is not given is: DO NOT SPRAY INSIDE OF ENCLOSED AREAS. Nor have any stations that I know of acknowledged letters to them about the potential for harm caused by DEET. To learn more about DEET, visit EHN's Insect Repellents section at http://ehnca.org/www/ehnlinx/pestcide.htm#Repellents
- Interested in MCS organizations worldwide? Visit MCS Links. I've included those I've come to learn about. If you know of others, please let me know. http://www.ehnca.org/www/ehnlinx/mcs.htm
- Want to keep abreast of the negative statements, brought to you in part by the "sound-science" guys and gals, so you know what you are up against? Visit Stuff Happens! http://ehnca.org/www/ehnhompg/stufhaps.htm
I find too many of our various -- and more vocal -- "experts" have vested interests. Couple them with the industry flacks who do a "land office business" in denigrating us, and you have a situation as we have today: Soaring rates of people living with asthma and other chronic illnesses, including MCS and cancers. And, you have so many living with chronic illnesses that were -- as Webster' defines iatrogenic -- "induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures." Some faced the ultimate: premature death.
This is a price paid beyond measure. A price that I feel has been exacted by the chemical industry. An example of their power over us is the (then) Chemical Manufacturers Association's, 1990 call-to-arms, Environmental Illness Briefing Paper. Take time to read that damning and damaging diatribe, which you can find online at: http://www.ehnca.org/www/books/cmaeibri.htm
Once you've read that, remember the words of Margaret Meade: "Never doubt that a small group of dedicated individuals can change the world ... indeed, it's the only thing that ever has." Then, get busy! Join a support group. Write letters to your local newspapers. Write to your congressional representative and senators. Use the information available on websites such as EHN's and the Fragranced Products Information Network (www.fpinva.org) to build your rational case for accommodation. There is much to be done.
As we, the already chemically injured, have been ignored for decades, millions more have gotten sick and too many have died prematurely. It is only a matter of time and they will have to pay attention to us, for they will become us. There is little chance of escaping an environmental illness. The question is: Which of the many ENVIRONMENTAL ILLNESSES will get them? . . . Or, you?
- If you want news pertaining to harmful effects of chemicals, click on The Word IS Out! This section's interesting articles may lend the support you need to prove, 1) It's NOT all in your head; 2) YOU are NOT the ONLY one! (http://www.ehnca.org/www/ehnhompg/wordout.htm).
Below the series of QuickClicks, you'll see two columns of information, which are also set up as clickables. I'm sure you're getting the hang of this now.
Here you'll find such gems as a quick link to Access for People With EI/MCS
by our late state Sen. Milton Marks http://www.ehnca.org/www/books/eimcsf1.htm.
You'll also find links to FDA pages of particular interest to those of us already poisoned by the products they don't regulate. You'll also find a quick link to the Sierra Club's resolution warning against the Excessive Use of Fragrance Products in Public Places
http://tamalpais.sierraclub.org/chapters/sanfranciscobay/policy/december1998.htm
Most of our extensive links -- along with some of my musing -- are available through our General Links section -- http://ehnca.org/www/#GENERAL. Each page of the alphabet carries information that could pertain to those living with chemical injury. Generally you'll find a few QuickClicks, at page top, to info on that page, but ever so many more links are available. Use your browser's find command to help you locate something . . . or just slowly scroll through and learn.
We also have extensive information available through our Government links pages --http://ehnca.org/www/#GOVERNMENT For a real "eye-opener" visit the FDA's site and its information regarding the chemical cosmetic industry. There is NO regulation of fragrances BEFORE marketing. Heck, the FDA can't even demand truth in labeling, therefore products labeled "UNscented" or "fragrance-FREE" can have fragrances. Fragrance chemicals are allowed to be used to "mask" other unpleasant chemical odors. You can link out to this info from EHN's HomePage, as well as from FDA under EHN's Government Links.
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What's a Barb Wilkie?
My Life with undiagnosed chemical-induced asthma
I've lived with chemical-induced asthma, quite successfully, since age five . . . As my mother recounted the story: A chemical pall settled over the south side of St. Louis from a refinery "mishap" up river in Wood River, Illinois. I don't remember my dad being made severely ill, but then he had a smoker's hack that was hard to separate in memory from the coughs my mother, brother and I suffered. Actually, I have memories of my dad bringing my infant brother to my mother in bed for her to nurse. (This period of time, and until the last week of her life before she died of cancer of the larynx at not quite 63 years of age, were the only times I recall seeing my mother down in bed.)
I remember having a severe cough, and the fact that my infant brother was so ill that when my folks would state to family and friends that they "almost lost Robert," I'd wonder how they could "lose" him . . . I always knew where he was by his coughing and crying.
I also remember that my brother developed an umbilical hernia as a result of all of his coughing and my dad brought in silver dollars -- one for my mom to tape around my brother's belly and one for me. I taped mine to my piggy bank's belly, as the coin slot was too small to hold a silver dollar. You can see Piggy and the remaining tape marks if you wish.
The medical industry did not recognize my type of asthma until much later in my life as I never wheezed, only coughed, and it was sporadic -- dependent upon what chemicals wafted my way. (I should be surprised that the medical industry doesn't recognize the insidious symptoms of MCS?) My family knew that I lived annoyingly, but easily enough, with severe coughing episodes that were triggered from time to time by chemical palls hanging over St. Louis, Missouri; the perfumey powders and perfumes that were more likely to be worn by "little old ladies with blue hair;" and/or younger women who were more likely to wear perfumes if they also wore their hair in upsweeps and wore platform shoes (this was the 40s). I also had "coughing episodes" as a reaction to cigar smoke and the smoke of some pipe tobaccos. During my childhood and into adulthood, cigarette smoke didn't bother me too much, but lighting a match or flicking a lighter did. I was a little kid many long years ago and guilty of "profiling" before I knew of such a word, as I sized up a situation and did my best to avoid the people I thought would give me a horrendous coughing spell, which was at best, painful.
Running could also trigger my severe bouts of coughing, but I always tried to participate. I loved hide and seek, but so I could get to a hiding place without coughing to give it away, the kids counted to 100. When the kids on my block -- I lived on Route 66 as it wended its way through St. Louis -- played tag, they'd start out with someone else as the tagger, knowing full well I was such an easy mark, and once tagged, that was it. If they felt like a good game of tag, they ignored me. When they were getting tired of it, I was tagged and then they all knew the game was over, for I could never keep up with the others. We played a lot of step ball and created our own game of badmitten, using ping pong paddles and a shuttlecock, with the back fence as our net. I could also handle hopscotch and bike riding, and certainly, playing with dolls, but it was the running that got to me royally. My closest friend was the youngest daughter of a large family next door . . . we were like sisters. And while we now live with thousands of miles between us, our hearts are still quite close.
My dad used to refer to my deep, barking coughs as my "sounding like a seal in heat." My child's mind handled that one perfectly . . . I always felt sorry for the seals at St. Louis Zoo in the summertime. Truth be told, I always felt sorry for myself in the hot, humid weather of a St. Louis summer, too.
A move to a healthier, but harder life
During my early teen years, my father decided to "retire to the country." Landed gentry, we were not. My dad maintained his chiropractic license and continued his practice in the Ozarks for the next four years. I attended eighth grade in a one-room school house with outside privies. On the school grounds, with children from first grade to my classmate, a girl from a farm about a mile from ours down the back road, we played Red Rover, and various other running games. I could run. No coughing. Freshman - Junior years of high school were spent in a consolidated district in town, 10 miles away. Unlike my earlier school years in the city, I wasn't sent home from school because of swollen lymph nodes or enlarged tonsils. The reason? I didn't suffer from swollen lymph nodes or enlarged tonsils. I wasn't breathing the polluted air of the city.
Looking back, the answer is obvious: The air was cleaner!
Through the clearer lense of retrospect, I realize just how much healthier I was living in the Ozarks, with a family who had lime spread to sweeten the soil and who spread manure from a barn rather than purchasing synthetic fertilizers and who rotated crops and didn't rely on synthetic pesticides. By contrast, while attending the large public grade school in St. Louis (Kindergarten through 7th grade), my dad wrote many a letter stating that enlarged tonsils meant they were working for my body and he was NOT going to have them removed on the say-so of a school nurse. And looking back, learning what I've come to learn about chemical poisonings, I now see why I had those unexplained severe cases of uncontrollable salivation during school, those swollen lymph nodes, those enlarged tonsils . . . and other symptoms, including the all embarrassing for a kid, diarrhea.
To borrow from a bromide: I died a thousand deaths from mortification. Yet not once did it cross my mind nor the mind of any other that I could have died from pesticide poisonings. Now I wonder about childhood friends of mine who did loose their lives prematurely, their health more severely than I lost mine. Pesticides? I'd love to now be able to ask my parents just why we moved. The one thing that was obvious is that my dad was developing symptoms of cancer of the jaw. It disappeared while we lived in the Ozarks, it returned after we returned to St. Louis. But, I wonder if my parents also took into account the health of their children. My gut feeling is that they did.
We became real family farmers. Mom, Dad, my brother (five years my junior) and I all pitched in whether it was preparing, tending or harvesting the garden; mowing, raking or pitching hay; collecting the eggs, ever mindful of snakes which loved to feast on them, helping a too-young heifer birth her stillborn calf; or, the all time favorite on everyone's list: mucking out the barn, which was then dispersed over the land by means of a maure spreader drawn by the tractor. We all played a part in getting the job done. We had to -- we were players in Mother Nature's game . . . and, as the saying goes, Mother Nature always bats last!
Back to St. Louis and back to undiagnosed chemical-induced asthma
Now what does any of that have to do and my undiagnosed chemical-induced asthma? I didn't have any asthma, nor even "hay fever," while living in the Ozarks. I didn't have my swollen lymph nodes and cases of flu . . . well, not until I spent a week back in south St. Louis visiting with my Aunt and her husband. Then my illnesses returned with a vengeance. As they did again, once we returned to St. Louis for my senior year in high school. We lost the game in the Ozarks to Mother Nature . . . beginning with a severe snow storm our first October there, following with the area's most severe drought since the days of the Dust Bowl. But the years there were great. It's a beautiful area. Our lives as farmers held us in good stead through the succeeding years. And our health improved . . . including my dad's.
Dad had a precancerous condition at the back of his tongue. He lived without his false teeth in the Ozarks and that with, I'm now sure, the healthier air, and better diet, led to the precancerous condition leaving. He was "clean" when we returned to St. Louis in 1956. In the early 60s, his precancer condition returned, developing into cancer. In November '62 he underwent surgery for removal of his jaw bone, 2/3 of his tongue, the glands in his neck and his top rib. Dad used to always say, with a grin, he got along fine without his top rib. Otherwise, he claimed that he had exchanged one severe pain for another. Nonetheless, he retured to his practice and his beloved patients. We had two children when dad underwent his surgery, but that gave him seven years more time and as time wore on, he got to meet and know and love our third child and my brother's two daughters.
My husband and I met at a dance, six months after I graduated from high school. Fellow MCSers will appreciate this: He noticed my nose from across the room. We married less than six months later and left St. Louis for the San Francisco Bay Area, where my husband was to return to UCB. Our son was born here, via natural childbirth in a hospital that also allowed mothers to nurse their babies and provided "rooming-in." I was a clinic patient, but had I had not been, Herrick Hospital was forward thinking enough to have allowed husbands to be with wives during the birth of their progeny. I lived around the San Francisco Bay and Pacific Ocean breezes symptom free, except for watering eyes when air pollution struck Berkeley during its rare hot spells. (Yes, we do have cleaner outdoor air now than back in the late 50s and early 60s).
We returned to St. Louis in 1961 for seven more years; our daughters were born there. Again, I was fortunate enough to have natural childbirth and nurse my babies. Interestingly, while again living in the St. Louis area, I was once more subjected to the severe coughing episodes from time to time, coinciding with chemical odors in the air. Some maybe released from the chemical manufacturers??? Certainly some from the pesticides sprayed throughout neighborhoods.
But, I never considered myself as being disabled. In pain? Yes. Impaired? Yes. Incompacitated from time to time? Yes. But disabled? No.
In 1968, we returned to the Bay Area and its cleaner outdoor air. My severe coughing episodes and flus died. At least for a while. Same person, Same body. Same head. Different locales. Different air. All in my head? Well, bad air does come into one's head . . . but that is to be distinguished from the acerbic accusations that our illnesses are somatic, that we are imagining them, that we are psychotic . . . that, as Dr. Ronald Gots has argued "[a]s a witness for the Compensation Board against hundreds of Camp Hill workers several years ago ... that those illnesses were 'psychosocial." (Source: NSAEHA spring 2003 -- Yarmouth decision: Nu7mber 2000-503-AD in the WCAT data base, Ontario decision No. 458/96 (1999, Ontario WSIAT).)
In 1975, as our kids were getting along the paths of their education, and I was enjoying life as a part-time student, I re-entered the workplace -- at first, part time. I remained with that agency until my forced retirement in mid-October 1998.
In the workplace
Please note as you read through some of my workplace experiences that most of my colleagues either didn't wear scents to work or quickly stopped when they learned that they were affecting my health and well-being. And also note that I never would have been able to struggle as long as I did without the untiring support of my friends and colleagues . . . and my chiropractor.
But it takes only one person to pollute the air for all, and there were several in that agency who chose to wear heavy scents, heavily applied. By the time I left, I felt that while I was the only employee diagnosed MCS, I was not the only employee living with the debilitating effects of Environmental Illness -- too many staff lived with asthma, bronchitis, recurring bouts of pneumona, cancers, headaches including migraines, etc. Others who suffered fragrance-induced illnesses would only complain to me for they saw what my trying to "work within the system" of the agency cost me. There's no recompense for the cost in health and abasement. There is no recompense for the loss of gainful employment. And, personally, I continue to pay dearly, even though I have a retirement stipend. With the advent of July 2003, I now have to pay for Medicare coverage that doesn't serve my healthcare choices: Chiropractic and Acupuncture. (I do not receive any Social Security because the agency I worked for was covered by the California Public Employee's Retirement System . . . I'm a quarter shy on Social Security credits and I cannot "buy back" that missing quarter. However, to continue with my Kaiser Senior DISadvantage insurance, I do have to buy into Social INsecurity's Medicare. The system has welcomed me to "Senior Citizen" status.)
I loved my job and I was really fond of most of the people I worked with -- that is saying a lot! The work was interesting, I was good at it, and the commute was easy. And, I had friends -- people who are still dear to me. Alas, there were a handful of staff, including managers, who felt they had a personal right to wear scents, notwithstanding the fact that their scents usurped the personal rights of others to breathe cleaner air. But, my problems weren't so much with the staff who continued to wear scents, as much as with the very few staff who tried to make my life miserable. For my body, that ventured on assault with a deadly weapon, but management chose to ignore them and me. I'm often put in mind of Confucius' Silver Rule, and wish more people adhered to it: "Don't do to others what you would not want yourself."
The history . . .
During a work-sponsored CPR class around 1980-81, it was a serious question in my mind if I'd be needing the CPR, for the small conference room held not only the dummies upon which we were to practice CPR, but also a few highly scented individuals. I had gone into my severe coughing episodes, which worried the individual from the Red Cross. A manager and co-workers found me highly amusing. Somehow I managed to pass the CPR class, but I left that class with severe pains in my chest . . . lodging, as they were to so often do in the future, right behind the sternum -- breast bone.
Starting in the mid-1980s, when my requests for fragrance-free accommodation became more serious and I was a little more vocal, I was laughed at, scoffed at, even ridiculed by my manager who announced merrily that I'd have NO SMOKING signs put up in my room, but NOT anything regarding perfume. She had never heard of such a thing as wanting NO Perfume signs, and SHE was a medical doctor's daughter. Of course, it did no good to tell her that my family HAD heard of such a thing and I, too, was a doctor's daughter (chiropractor). At this time, I still thought of my reactions to perfume as "my problem." Goodness knows I was told that often enough! However, I also knew others suffered because I could hear their coughs or sneezes as a perfumed individual sauntered by. But I had yet to learn that fragrance sensitization was widespread and that there was an excellent reason for it: The PETROCHEMICALS. (We often see warnings about the alcohol in perfume adversely affecting fine jewelry, to bad we don't see the warnings about the alcohol and petrochemicals adversely affecting fine health of users AND nonusers!)
The rest of the 80s and through spring 1991, were years of serious struggle as my health continued to worsen. I suffered increasing asthma attacks ... more severe and longer lasting. I then spiraled down into chronic asthma and chronic bronchitis. I also developed chronic sinusitis and laryngitis. Sometimes I had no voice, other times I'd develop the Lauren Bacall sound, but most of the time my voice just had that telltale "scratchy" aspect to it that's so common among those reacting to chemicals.
In April 1991 I went into the undiagnosed yet unmistakable abyss of MCS when I suffered perfume poisoning in outdoor Dodger Stadium. I was fine until a young woman sat in front of me along about the 2nd or 3rd inning. She reeked of a musk-like scent that had been very popular with some staff in my workplace. The worst of that series of mainly respiratory illnesses lasted a good five weeks, and yet, I never fully recovered.
An aside: OSHA enters stage right, "MCS is clearly not occupationally related." http://www.osha-slc.gov/SLTC/multiplechemicalsensitivities/index.html I disagree! Had it not been for the years of expsosures to the superfluous toxins in scented products in my workplace -- and particularly to that same musk-like scent -- I probably would not have gotten so devastatingly ill at Dodger Stadium. No one else I was with went into the MCS abyss that night, although they all were made highly uncomfortable because of that young woman and her perfume bath. But more importantly, the workplace is the most common polluted area, whether its because of the job one does, such as work in refineries, plastics, construction, etc., or in an office that relies on highly scented products and pesticides. People have enough sense to switch to less polluting products in their homes and for their personal care, yet in the workplace they are subjected to all of the toxins unwittingly (I trust) used by others.
UPDATE: 04/11/03 ... OSHA has FINALLY changed their webpage on MCS, and in particular their statement on Control, which I had quoted above, and which had remained in place for years, despite letters and phone contact. As I view it, this OSHA rewrite sticks it to the already chemically injured by referencing for example, that biased interagency treatise on Multiple Chemical Sensitivity and by linking to an editorial in American Family Physician, titled, "Multiple Chemical Sensitivity" and written by "ROY L. DEHART, M.D., M.P.H., University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma. In part he writes/quotes:
Of course, I'm left wondering what in the world Dr. DeHart and all others who stultify those of us who are already chemically injured have to say about our heroes who have cleaned up the Exxon Valdez killer oil spill, or our GWI and now GWII Gulf War Vets -- who by the way while living with denied GWS, now has it acknowledged via the back door as the current Bush administration states it will be monitoring its vets -- and, of course, springs to mind our paladins of the horrific events associated with September 11, 2001. Our other heroes happen to be all workers who, despite living with chemical injury, try vainly to remain gainfully employed, while getting sicker and sicker and sicker because workplace management teams don't see the need to move to programs that would assure cleaner air for all.
"Control
"Limited information is available on effective control measures, exposure assessments,
and regulations dealing with MCS; however, OSHA does regulate exposures to
specific chemical hazards. See the Safety and Health Topics page for Hazardous and
Toxic Substances --http://www.osha-slc.gov/SLTC/hazardoustoxicsubstances/index.html -- and Ventilation -- http://www.osha-slc.gov/SLTC/hazardoustoxicsubstances/index.html."
As 1991 progressed, I found I had a hard time inspiring myself to get dressed for work. I was intelligent enough to realize that going to work, in an environment loaded with heavy fragrances, heavily applied, was taxing my strength and stripping me of my health. But I wasn't alone. Many others sufferedm but only migraines, or asthma, or chronic bronchitis, or laryngitis, or rhinitis, or muscle pains and joint aches, or . . . (I had all of those symptoms and acquired even more.) I didn't then know that synthetic fragrances were largely made of petrochemicals, I just knew they made me sick . . . and I was becoming progressively worse. Strange as it may seem, I enjoyed my job and working with many of my colleagues. I'd go into work in good faith of doing my job, always in hope that my employer would begin practicing good faith measures of their own for all staff -- and would begin educating staff about cleaner air for all. Instead, they often patronizingly thanked me for caring so much for the health of staff . . . with the unspoken message that it wasn't lost on them that I only pretended to be concerned about cleaner air for all, while really wanting it only for myself. (Quite a concept in modern "sealed" buildings with shared air for all floors.)
Along about October 1991, I seemed to be dragging even more than usual. Never once did I think of my self as "depressed." I just was so very tired and it took all my home time to recover to face the polluted air the next day, or following Monday. One of our daughters was a practicing, licensed massage therapist. At her suggestion, I booked appointments for massage treatments -- she used various methods in different sessions. My health seemed to have improved -- I certainly felt better enough to get some of that old "zip" back into me. Also by that time, friends began to realize that I really could not be around synthetic scents. Many folks, who did not wear scents to work began informing me of areas to avoid as being particularly smelly that day. I felt the benefits of an informal network, which I dubbed: The Nose Knows Gang, or The NKG, as we worked in an acronym/initial society. But I always look back to my massage treatments as the very beginning of my climb out of the as yet un-named abyss.
In March 1992 I finally learned what I had. I'd always been "healthy as a horse." And, I still consider myself such, except when exposed to the plethora of modern superfluous toxins that have become ubiquitous and are known benignly as "fragrance." If you are interested in learning a little of my continuing climb out of the MCS abyss, see my farewell to Julia Kendall, "An Extraordinary Woman" at http://www.ehnca.org/www/newreact/julia97.htm. (I have to be ever mindful of chemical assaults, and don't consider myself cured, but I have become more active after retirement. Naturally, my air is cleaner -- not dust-free, mind you -- simply not laden with superfluous synthetic chemical products used by others. As in most cases in life, there are exceptions. My neighborhood is awash in fabric softener pollutants from time to time, and, of course, I am then affected by synthetic chemical products used by others. This always leads me to wonder: How is it that a product considered to be a "PERSON CHOICE" item is allowed to ruin the air for everyone, despite underlying conditions, such as fetal development, infancy, old age, compromised health, ...? John Wodatch -- and my conversation with Bay Area Air Quality Management District)
Once I discovered through Julia's work that fragrances were not just flower petals, animal parts and alcohol -- although the alcohol alone would be bad enough! -- I tried to reason with co-workers. I tried education. I sought help from my manager, sought help from Human Resources -- BIG mistake! I also sought help from the non-union representation of my workplace (tenacity is one of my traits). I tried humor. I tried reason. I got sicker and sicker. I'd collapse at night and on weekends in order to again face work. Work, which I knew would be really great, if only I could breathe!
Toward the end of my career, management started to pretend to be most interested in "helping" me ... all part of demonstrating "good faith." The part of good faith that seemed lost on management was the part that states: "demonstrates good faith efforts, in consultation
with the person with a disability." [Emphasis added.] (Source: EEOC http://www.eeoc.gov/docs/damages.html.) The management leadership really did not want to hear from me about what accommodations could work. See: Fragrance-free Workplace Accommodation Request at http://www.ehnca.org/www/ehnhompg/mcswkpac.htm
But even when they reluctantly issued a couple of requests for staff to keep in mind the staff who are made ill by fragrances, they didn't back that up. Besides, so often the message sent to staff was so poorly stated, it became laughable. Of course, everyone recognized the fact that I was THE one. They'd also time the release of their messages to show just how desperately hard they were trying to accommodate. I was the only one diagnosed MCS, but sure as I'm now unemployed, other staff were living and working with a variety of serious Environmental Illnesses (in my opinion).
I was not the only one working with the irritating fragrance sensitivity either. (Irritating because fragrances are recognized irritants, and irritating because my needs for cleaner air certainly irritated the very daylights out of some scent-using staff.) As so many others have experienced in their workplaces, I was the agency scapegoat. Other staff would say apologetically to me that they are really glad I was strong enough to struggle, but they had their careers to think of . . . or they weren't as bad off as I was . . . or some just said: You'll never win, and I'm not going to get involved in this issue. Some, while not joining my cause, became my "Nose Knows Gang."
I was forewarned if a particular area was really polluted by synthetic scent on a given day, or if there was a public meeting in a conference room and the attendees were highly scented. I thoroughly appreciated the help and support I did receive, and I certainly could understand my colleagues wishing not to take a stand. One who did was tarred with my brush. When that staffer would make a comment about some cleaning chemical, a perfume, an adhesive, a particularly smelly application of pesticides . . . the comment forthcoming was something along these lines: "OH, YOU are sounding just like Barb" . . . or, "You aren't pulling a Barb, are you?"
Sadly, I could not convince my employer that everyone could benefit from a "cleaner air for all" approach. For example, I personally do not think it is wise to disassociate benign and malignant tumors in staff from pollutants in the air, which volatilize from commonly used consumer products. Cleaner air for one, could mean better health for all. I was forced into early retirement in mid-October 1998. My body's response to being ostracized in June 1997 to an even more toxic office space was to develop a fast-growing tumor, which at first was diagnosed as a probable malignancy in the form of an ovarian tumor. Fortunately, for me, it proved to be benign and my ovary fine and healthy, and I've avoided surgery. Pain management -- and hopefully the tumor's demise -- is being managed successfully by acupuncture and Chinese herbs, which I began in August 1998. I learned I had a benign, pedunculated tumor off my uterus October 30, 1998, after acupuncture treatments, and with a third sonogram . . . and a couple of weeks after my early retirement.
EHN work picks up in response to that need to do SOMEthing
I had the pleasure of meeting up with Betty Bridges, RN in the mid 1990s through e-mail, about the time I first uploaded Julia Kendall's work to the world of email and lists . . . before I even thought of building a website. If you wish to find a wealth of information on synthetic fragrances and the industry, do take time to visit Betty's website: Fragranced Products Information Network of Virginia at http://www.fpinva.org. You will notice that the FDA Petition is available through both EHN and FPIN sites. Betty also serves on EHN's Advisory Board. (April 2002: Betty's article, "Fragrance: emerging health and environmental concerns" is available as an abstract from http://www3.interscience.wiley.com/cgi-bin/abstract/93514043/START -- Online ISSN: 1099-1026 Print ISSN: 0882-5734; Flavour and Fragrance Journal, Volume 17, Issue 5, 2002. Pages: 361-371.) The entire article is available as a "preprint" from Betty's page: http://www.fpinva.org/FragranceReview.htm
Citizens' Petition, Docket Number 99P-1340
Now, a little more about EHN's FDA petition, which was submitted in May 1999 and asks that our government agency -- the Food and Drug Administration -- follow the regulations already in place on its books to require warning labels on fragrances released to market without adequate testing. Products that have not been adequately tested and released that don't carry the warning label are considered by the FDA "misbranded."
And that, my friends, is the beauty AND importance of this petition. The reason we petitioned the FDA in the way we did is spelled out in the FDA's Authority Over Cosmetics (http://vm.cfsan.fda.gov/~dms/cos-206.html).
While the FDA has the requirement for warning labels, it does not enforce it. Inadequately-tested fragrance products are released to market without the prescribed warning label. Those products should then be declared "misbranded." That has not happened. The FDA further states: "FDA can inspect cosmetics manufacturing facilities, collect samples for examination, and take action through the Department of Justice to remove adulterated and misbranded cosmetics from the market." THAT has not happened either.
Earlier analyses of six scents uncovered a number of individual chemicals about which toxicological data is not known. The analysis of one of those six scents, and the chemicals discovered, are given in a table format with a brief comment regarding the toxicological information discovered in MSDS (Material Safety Data Sheets), when available. What we have found is that some of the chemicals used in fragrances are known irritants and sensitizers, and other chemicals are known or suspected carcinogens (capable of causing cancer), neurotoxins (affecting the central nervous system) and teratogens (adversely affecting embryonic and/or fetal development). See http://www.ehnca.org/www/FDApetition/analysis.htm
Tens to hundreds of these chemicals are combined to make any one scent. The industry has a repertoire of between 3,000 and 5,000 chemicals. Synthetic fragrances -- not just plastics -- contain phthalates. I believe that FDA Petition 99P-1340 clearly shows that the safety of synthetic scents has not been substantiated.
Let's take a closer look at the FDA's "authority." What the FDA can do is to follow the regulation already on its books. While the "FDA cannot require companies to do safety testing of their cosmetic products before marketing," it can require a warning label; it simply does not. The FDA states: "If, however, the safety of a cosmetic product has not been substantiated, the product's label must read:
'WARNING: The safety of this product has not been determined.'"
What the FDA cannot do benefits the fragrance industry, not public health. You've already learned the FDA cannot require safety testing before marketing. The FDA also states (emphasis added):
"FDA does not have the authority to require manufacturers to register their cosmetic establishments, file data on ingredients, or report cosmetic-related injuries.
To keep abreast of such information, FDA maintains a voluntary data collection program. Cosmetic companies that wish to participate in the program forward data to FDA.
"Recalls are voluntary actions taken by the cosmetic industry to call back products that present a hazard or that are somehow defective. FDA is not permitted to require recalls of cosmetics but does monitor companies that conduct a product recall. If FDA wishes to remove a cosmetic product from the market, it must first prove in a court of law that the product may be injurious to users, improperly labeled, or otherwise violates the law.
FDA collects cosmetic product samples as part of its plant inspections, import inspections, and follow-ups to complaints of adverse reactions. The agency does not, however, function as a private testing laboratory. FDA is prohibited from recommending private laboratories to consumers for sample analysis. Consumers may consult their local phone directory for testing laboratories.
FDA can inspect cosmetics manufacturing facilities, collect samples for examination, and take action through the Department of Justice to remove adulterated and misbranded cosmetics from the market. Domestic and foreign manufacturers must follow the same regulations. Foreign products that appear to be adulterated or misbranded may be refused entry into the United States.
Source: http://vm.cfsan.fda.gov/~dms/cos-206.html
How many cases have you heard of the FDA inspecting "cosmetics manufacturing facilities, collect[ing] samples for examination, and tak[ing] action through the Department of Justice to remove adulterated and misbranded cosmetics from the market"?
There's additional information about cosmetic labeling on "FDA's Food and Cosmetic Regulatory Responsibilities - A summary of the legal requirements affecting manufacture and distribution of food and cosmetic products within and imported into the United States at http://www.cfsan.fda.gov/~dms/regresp.html and Cosmetic Labeling Manual at http://www.cfsan.fda.gov/~dms/cos-lab1.html where it states, under the subhead -- ADULTERATED OR MISBRANDED COSMETICS -- "A cosmetic is misbranded if its labeling is false or misleading, if it does not bear the required labeling information, or if the container is made or filled in a deceptive manner."
So folks, check this out for yourselves. If you feel that you deserve scented products proved safe BEFORE marketing, or at the very least think that they should carry the FDA required warning label, "WARNING: The safety of this product has not been determined," then join us by writing to your Representative and Senators. And, by all means, write to the FDA, referencing Docket Number 99P-1340 (email: fdadockets@oc.fda.gov Mail and fax contact information available at FDA Petition (http://www.ehnca.org/www/FDApetition/bkgrinfo.htm).
From FDA Petition to SNIFF
It was private testing, paid for privately, that led to the findings, which in turn led to the FDA Petition, Docket Number 99P-1340. And, this in turn led to SNIFF -- the Safe Notification and Information for Fragrances Act, HR 1947 (107th Congress). http://ehnca.org/www/ehnlinx/s.htm#SNIFF
SNIFF was introduced into the House, May 22, 2001, by Rep. Jan Schakowsky (D IL). SNIFF is co-sponsored by Rep. Shelley Berkley (D NV) on May 22,2001 and by Rep. Chaka Fattah (D-PA) on July 18, 2001. (Please write to your representative and ask that this bill be co-sponsored, or at least supported. Write to your state senators and ask them to introduce a similar bill in the Senate.)
The FDA hasn't acted upon Petition 99P 1340 despite the fact it has generated over 1,200 letters by mid-December 2001, without attention from mainstream media.
Times, they are a changin'. I'm pleased to report that on February 6, 2002, Francesca Lyman, MSNBC Contributor wrote, "Scents and sensitivities - What to know before buying a Valentine's Day perfume" http://www.msnbc.com/news/702445.asp
Please do visit this article. As far as I'm concerned, its most important information is the fact that the industry proves once again to be duplicitous. We read:
Products are thoroughly tested before being marketed to assure their health and safety, says Glenn Roberts, spokesperson for the Research Institute for Fragrance Materials, an industry-sponsored group that does testing of chemicals.
But near the end, we learn:
In response to the perceived problems of fragrances in the air, Roberts says that his industry group has begun the first study to examine fragrance inhalation. "We¼re spending a lot of money on this," he says, "to understand the systemic effects of fragrances on organs and nervous system, what happens when fragrances are inhaled."
Oh, do tell! How can it be that "Products are thoroughly tested before being marketed to assure their health and safety," and yet, the industry has just begun its FIRST STUDY?
Interestingly, now -- after years of the already-chemically injured beseeching the industry, the FDA, CPSC, et al., to test -- we learn that the "industry has begun the FIRST [emphasis added] study to examine fragrance inhalation." And do enjoy their whine: "We¼re spending a lot of money on this..."
Please use this industry information and the FDA Petition information when you write to your representative and your senators about synthetic scents, seeking their support of SNIFF, HR 1947.
As far as SNIFF is concerned, Congress has had its attention directed toward the events and aftermath of September 11 . . . so SNIFF hasn't moved forward. But that shouldn't stop us from contacting our representative and senators to request that they introduce or sponsor a similar bill in the senate.
IF history is any judge of the future, the people affected by the fumes and the debris of WTC and the Pentagon, will be suffering from MCS. Not because they'll be suffering "mass hysteria," or "panic attacks," or "anxiety disorder," or that other industry-biased favorite, "psychogenesis," but because they, too, have been chemically poisoned.
Their bodies will begin to show the insidious symptoms that far too often mainstream medical doctors cannot properly diagnose. Our heros will likely develop many chronic symptoms, which are "unexplained" ailments caused by chemical injury.
These newly-injured people will join the folks who were injured in the Exxon Valdez clean-up. They'll join our Gulf War vets, and those of us exposed to refinery releases, to chemical plant leaks, to diesel exhaust, to asbestos fibers, to tobacco smoke. They'll join those who were injured in lab spills, and those who were injured in the workplace by unrecognized hazards found in commonly used consumer products such as synthetic pesticides, synthetically scented personal care and household and janitorial cleaning and maintenance products. They'll join folks injured by the high-emitting VOCs from carpets, adhesives, paints, solvents, etc. They'll join those of us whose bodies can no longer handle the synthetic drugs -- over-the-counter or prescribed. Chemical injury takes a toll on an increasing number of lives. No one can be too smug about not having MCS. Not even our heros of the horrific events of September 11, 2001.
As I see it: As time goes by, the FDA Petition and SNIFF will become even more important, because time and again, right up their with substances like diesel exhaust and fresh paint that "take one's breath away" you'll see listed: FRAGRANCES.
As you must have gathered by now, my MCS is OJT (on the job training). What I have learned I have done my best to share with you through EHN's website. I've built links ... it is easy for you to check my veracity. Also, check EHN's page, Take Heart! upon which you will find EHN's Access information. That page reflects advocacy work, not only engaged in by EHN and myself, but by many other good people around the world. See http://www.ehnca.org/www/ehnhompg/takheart.htm
EHN's website is here to serve as a resource tool. Think of it as a "self-help kitchen." You'll find an incredible number of links. Not all of them will work. That is often beyond my control. I cannot keep up with the outside links on this site, and continue to add new information. When people write to tell me of a broken link, I try to find the new one, or delete the information . . . or in the case of news articles suggest that you use the title, author, date and souce to further investigate, even if it means a trip to your library. Also, sometimes newspapers will make past columns available over the internet, for a price.
As our disclaimer states at the top of EHN's HomePage: EHN's site -- HomePage, www.ehnca.org -- is not a substitute for professional health care or legal advice. Please use only as a tool to assist you in gathering information, which you have a right to know. A health care practitioner should always be consulted for any health problem. Please contact a lawyer to answer your legal questions.
Thus far, I only live with MCS, but many friends also live with EMF (electromagnetic field) sensitivities. EHN's site has information available on EMF as well, please visit EMF/EMR at http://www.ehnca.org/www/ehnlinx/e.htm#EMF for more information.
Enough of my "credentials." Please start exploring and using EHN's website to help yourself.
All best wishes!
-- barb
