Global Recognition Campaign for Multiple Chemical Sensitivity

  


Helen
 

I am an Australian citizen who grew up in New York City from the age of 13.

I am pleased to submit my testimonial regarding life with Multiple Chemical   Sensitivity.  This is a worldwide problem not only for Australians at home but abroad as well. 


MCS knows no boundaries in it can affect the affluent, poor, old, young, educated and uneducated alike.  I hope this is of help to you.
 
It is hard for me to look back and realize that I have been suffering with Multiple Chemical Sensitivity for almost nine years now.  I became an mcser in 1996 at the time I was 28 years old.  The impact on my life has been no less than catastrophic.  In addition to MCS, I also suffer from chronic fatigue syndrome, fibromyalgia, chemically induced asthma and hyperanosmia.

My condition is disabling, distressing and painful. 

Although I am 37, I mostly feel like a geriatric. I am in constant overall pain; sinus pain as well as joint pain and can be unstable on my feet. I have memory problems causing me to lock myself out of my living space and flood the bathroom amongst other more drastic things like leaving my purse behind in a store while having a reaction to chemicals in that environment.  Additionally, I suffer from depression; thoughts of suicide have plagued me throughout this illness.  Life with MCS is hard, limiting, isolating and frightening.
 

Above all that, is also the constant need to educate physicians, and the general public who are generally ignorant of the condition of Multiple Chemical Sensitivity.

The perception most ignorant people have of mcsers is that we are hypochondriacs or that we simply have an aversion to perfumes and other odors and if we tried a little harder we’d get over it.  People cannot grasp the severity of a disabling case of MCS; many people simply do not have a reference for it.  I have almost fainted at the smell of someone with perfume just walking by me.  Exposures can be life threatening and extremely painful.  In addition, most hospitals do not have an MCS protocol on hand and unlike Nova Scotia, Canada do not require that their personnel go unscented.  Hospitals are a hotbed of toxic exposures to people with MCS and often contribute in making sensitive patients with MCS worse.
 

I believe there were many factors that contributed to my developing Multiple Chemical Sensitivity, some avoidable, others not. 

At the time I developed MCS, I was living in New York City on 47th Street in a two-bedroom apartment.  It was there that I received a continuos low level exposure to perchloroethylene from the dry cleaners roughly 100 yards directly across from my bedroom window.  I am now extremely reactive to perchloroethylene, if I involuntarily come in contact with a dry cleaners or dry cleaned clothing I suffer pulmonary distress, irritation of my skin and eyes.  I can also smell it a mile away.  Having hyperanosmia a direct result of having MCS my sense of smell is extremely heightened.  I smell things 40 to 100 times stronger than a normal person. I can and have detected percholorethylene in the air from a dry cleaners 2 blocks from my residence.
 

Most people with MCS develop olfactory dysfunction either anosmia - a decrease in the sense of smell, cacosmia - a distortion of the sense of smell or as in my case hyperanosmia, a heightened sense of smell.  My hyperanosmia in and of itself is disabling, making it extremely difficult for me to get around and almost impossible to be near other people.
 
I also suffer from cognitive disruption and have seen my I.Q. drop 20 points.  Many a day throughout this illness I could not put words or thoughts together.  I cannot work, launder my own clothes due to the reaction I have to most detergents, I cannot cook for myself and have difficulty with even the simplest of daily activities.
 
Amongst other direct exposures that contributed to my developing and the worsening of my MCS was the construction done in and around my apartment on 47th Street. Amongst the exposures that injured me were the acid washing of the basement below my apartment, the continuous painting and polyurethaning of the floors using oil based polyurethane, in the second of the two bedrooms in my apartment as well as the apartments below me.  In addition to this, there were two bad leaks in the heating pipes under the floorboards in the second bedroom, which created a haven for mold and mold exposure.  As a result, I am extremely mold sensitive and excessive exposure to mold causes constant nosebleeds, sinus infection and sinus headaches and pain for me.
 
At that same time, I believe it was my work in a props company that contributed to my becoming exposed to formaldehyde and other more noxious chemicals.  I worked in a prop company supplying props to movie and TV companies.  I was in constant exposure to the formaldehyde in new furniture, not to mention that the company had epoxyed one of its main floors, and there was a constant smell of plaster dust in the air from the new construction that had been done.  My sinuses were always irritated and in pain.   I am now extremely sensitive to plaster in any form and formaldehyde.  I cannot be around anything new such as new clothing, shoes, furniture, lines, you name it.
 
In addition, in 1996 I also worked in a theatre making props for the stage in a poorly unventilated work area in the basement.  While there I was exposed to cigarette smoke by a smoking employee as well and the constant smell of plastic burning from the glue guns as well as all the other materials we used in creating props.  I am now extremely sensitive to the out-gassing of new plastic.  In that musty, extremely dusty basement I believe I may have also been exposed to pesticides as well as the continuous fumes from a furnace. I would leave the theatre with my sinuses hurting. I do believe in my case my sinuses were the first organ affected.  They remained swollen for 18 months after I developed MCS.
 
After I became over-sensitized to the construction work done in and around my apartment I became sensitized to all construction work done anywhere.  I cannot move into a freshly painted apartment especially if it has been polyurethayed. Housing therefore is difficult for me to find and as a result I have many times had to move due to construction work being done and many times been made homeless.
 
I am one of the most reactive people I know with MCS having 50 – 100 reactions in any given day.  I truly believed this illness would kill me and still do. 


If I were to get in the wrong situation and have another extreme exposure like the one on 9/11 (I was in Brooklyn at the time). 

I am still suffering and in recovery from that day.  I mostly react to petro-chemicals and petro-chemically based products which include air fresheners, paint, insecticides, pesticides and herbicides, body care products, most household detergents, diesel, petrol, new carpeting, just to name a few.
 

I cannot call life with mcs, living! 

It is existing, a constant struggle to get through the pain; living one day at a time and only one day at a time.  When I was a healthy person I did many varied things, I volunteered at an AIDS clinic, as well as the Metropolitan museum.  I worked at Christies, on films as well as a dating service as a matchmaker.  I actually believed there were no boundaries in my life that I couldn’t cross until I hit the wall of MCS, a life stopper.
 
I will never marry, never have children and more than likely never do the little things that most people take for granted go to a movie, have lunch with friends at a restaurant; or do the things one should do such as going to a grandparents’ funeral or brothers’ wedding. 

Multiple Chemical Sensitivity has robbed me of more than just my youth - it has robbed me of everything.
 
  Yours truly,
 
  Helen
New York

Email:   Mcschick(at)hotmail.com

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