Press Release from National Center for Environmental Health Strategies
~ Mary Lamielle
… excerpts …
National Council on Disability Transportation Report Addresses Chemical and Electrical Sensitivities; Recommends Changes in Policies and Practices to Improve Access
Posted in Accessibility, Disability, EHS, Environmental Health, Environmental Sensitivities, Human Rights, MCS/ES, Multiple Chemical Sensitivities
Tagged barriers to access, chemical, disability, EHS, electrical, electrical sensitivities, Mary Lamielle, MCS, public transit, transportation, wireless
People all over the industrialized world have been developing Multiple Chemical Sensitivities and Environmental Sensitivities, or Environmental Illnesses. We are exposed to so many petrochemical pollutants, in our air, water, foods, clothes, furnishings, homes, and elsewhere in daily life, substances which are now known to cause many kinds of adverse health effects, and some of us just have the epigenetic disposition to feel the effects faster and more extremely than others who may develop cancer or some other condition many years later.
Amelia Hill (aka the Amazing Amelia Hill) lives in Australia and developed very severe, or extreme MCS after not being properly diagnosed for too many years. A lack of proper diagnosis and precautionary measures usually results in a debilitating worsening of the condition, which is best addressed with avoidance of the triggering substances, and building up health in very targeted ways. This is much more difficult to do the longer one isn’t able to take the steps to avoid exposures and rebuild life with safe alternatives.
Amelia’s life is probably unlike any you have ever heard of (even mine) although there are many similarities between the experiences those of us who have severe MCS/ES share. Amelia is known as “amazing” because of the ways she handles her life.
You will see why here.
Amelia’s story has been featured as the cover story in what may be South Australia’s most popular newspaper weekend magazine: Continue reading
Posted in Chemicals, Disability, Education, Environmental Health, Environmental Sensitivities, Food, Health, Healthy Environment, Human Rights, Multiple Chemical Sensitivities, Public Health
Tagged allergies, Amelia, asthma, Australia, Chemicals, chemicals in clothing, EHS, elecrtosensitive, Food, fragrance-free, health care access for people with MCS/ES, indoor air quality, MCS, MCS housing, pesticides, petrochemicals, sensitive to pollution, wireless
Mimi from Ontario, Canada has this to say to us:
I wish that you could accept that this is real and that your habits make me ill.
I wish you could understand how switching to fragrance-free products is such a small act that means a world of difference to me – literally.
It means being able to have a clear mind in order to work effectively and support myself, it means being able to receive hugs, it means not suffering every day.
Posted in Accessibility, Disability, Education, Fragrance, MCS/ES, Multiple Chemical Sensitivities, Support
Tagged fragrance-free, hugs, MCS, Products, think clearly, work
Guest Post by Leah Spitzer
I have Multiple Chemical Sensitivity (MCS) – a “multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances. (Environmental Protection Agency).” In other words, I react to fragrances, building products and more. It is not a histamine reaction, but rather, a systemic reaction to the chemicals in fragrance and other products.
As someone with MCS, I’m also known as a “canary” with deference to the Canaries in the Coal Mine. As a canary, I often encounter looks of disbelief when I mention I can smell someone’s laundry detergent, or fragrance. I can smell it on them, their dog, their cat, their clothes, or even the package they are bringing me. I smell it in their home and in their car.
Often times, if it’s just a passing moment, I try to step back, or just tough it out, but sometimes I have to speak out. When I do, the most common response, after the surprised look, are:
“I didn’t put any perfume on this morning”
“I don’t smell anything”
Why the disparity in perception? There are several reasons that I have observed:
Posted in Air Quality, Environmental Health, Environmental Sensitivities, Fragrance, Multiple Chemical Sensitivities
Tagged canary, fragrance chemicals, fresh, laundry products, MCS, MCS/ES, perfume, petrochemicals
For your information, here are scans of the MCS brochure from the Environmental Health Clinic at Women’s College Hospital in Toronto, Ontario. Note that they see mostly patients with milder to middling MCS/ES (and there’s usually a 6-12 month wait list), as those with more severe MCS/ES are unable to access the clinic, it being in a regular hospital with hand sanitizers, hundreds of toxic people and plenty of unsafe materials everywhere.
The brochure is an introduction, and reducing exposures is always a good thing, but sometimes people with MCS/ES need to eliminate exposures to remain at all functional, and that’s where things become a lot more complicated, and why we need the OCEEH.
Another One Bit the Dust
I survived my second home extraction on the weekend. It was a very infected tooth, an upper rear molar, one that I had somehow managed to retain a year longer than expected. It was actually the first one to get infected last year, but then the other tooth went ballistic, and by the time that extraction site healed, this tooth had calmed down enough to be very useful for eating with.
In hindsight, waiting so long may not have been such a great idea, as in the end, the infection was nasty. Very nasty. It put me into a terrible funk that was really difficult to push my way through, similar to the depression some kinds of mold can cause, and created the same challenges MCS/ES exposures cause, like brain fog, difficulty thinking and doing things, and a real lack of energy. And it stank when pulled. Really stank.
I am so grateful for the home visiting dentist in this area. Not only is he fragrance-free, but he is willing (and able!) to take other precautions to make things safe for me.
Last year, before my first home extraction, we discussed everything that was needed for the procedure, and what was necessary to make it as safe as possible for me.
This year I couldn’t find my old list (despite seeing it a month or 2 ago) and hoped he remembered his. This is what I do remember, and what we did:
Posted in Accessibility, Dental Care, Disability, Environmental Sensitivities, Health, Human Rights, MCS/ES, Multiple Chemical Sensitivities
Tagged appliances, dentist, extraction, fibromyalgia, MCS, MCS dental care, oxygen, puree, systemic barriers, systemic discrimination, VOC free blender, VOCs
Recognition Inclusion and Equity is the name of the new website for the OCEEH. Their comprehensive reports and other information about this much needed project can all be found there now. Please check it out and also “like” their facebook page if you are on facebook.
Why? From their website:
Our overarching goal is to achieve ‘recognition, inclusion and equity’ for people living with the often painful and disabling conditions of ES/MCS (environmental sensitivities/multiple chemical sensitivity), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) and FM (fibromyalgia).
At present, more than 568,000 patients with these conditions lack the normal rights, benefits, policies, programs and facilities that Ontario makes available to those with conditions of comparable severity and prevalence. …
CONDITIONS OF COMPARABLE SEVERITY AND PREVALENCE
Posted in Child Health, Environmental Sensitivities, Fibromyalgia, Health Care, MCS/ES, ME/CFS, Multiple Chemical Sensitivities, Public Health
Tagged chronic environmentally linked conditions, complex chronic illnesses, health care access for people with MCS/ES, OCEEH
What if you had the chance to say one thing about your life with MCS/ES, and how it would change your life if it was understood?
May is MCS/ES Awareness Month (yet again… maybe some year we won’t need it to be, but this year, we still do), and this year, I would like to share some of your stories and insights.
If you could tell the world ONE thing about your life with MCS/ES (or any other invisible disability that has MCS/ES as a symptom), what would it be?
How has this one thing affected your life?
If this one thing were changed, how would your life be different?
You could think of it as a conversation with someone you love, someone who loves you (or even a kind stranger), someone who wants to understand, and who is willing to do something for you, and/or to change the way they do things, in order to include you in life, and to help you with what you need or want to accomplish in life (for example).
This is your time to tell them this one thing, and how this change will impact your life for the better.
Here’s what I am asking for with your submissions: Continue reading
Posted in Accessibility, Action, Change, Disability, Environmental Health, Environmental Sensitivities, MCS/ES, Multiple Chemical Sensitivities, Support
Tagged accessibility, advocacy, allergies, autism, communication, community, education, family, fibromyalgia, friends, heart to heart, invisible disabilities, MCS, MCS/ES, ME/CFS, sensitivities, writing
Multiple Chemical Sensitivity: A Life Altering Condition
Produced and Directed by Alison Johnson
Note from Alison Johnson:
“Since 1998, I have made three long documentaries and three short ones. During this fifteen-year period, I have gained a much deeper understanding of multiple chemical sensitivity and its great impact upon so many lives. This new composite film contains the best and most effective sections of my six earlier films. I have chosen carefully which experts and patients to use from my earlier films so that this new film will be an effective way of helping people to understand multiple chemical sensitivity. The film contains footage of interviews with four members of Congress as well as with many important physicians.”
More info and a list of physicians appearing in the film:
Much gratitude to Alison Johnson for all of her work over the years.
Posted in Environmental Health, Multiple Chemical Sensitivities, Public Health, Toxic Trespass
Tagged Alison Johnson, asthma, Chemicals, disability, discrimination., documentary, environment, environmental sensitivities, exposures, Fragrance, GWS, health, MCS, MCS/ES, Mold, multiple chemical sensitivity, petrochemicals, Symptoms
When people develop MCS/ES, it can be extremely challenging maintaining access to jobs, housing, or other services due to the prevalence of indoor air pollution and pollutants, fragrance chemicals being a huge factor. When MCS/ES becomes disabling, it becomes a human rights issue requiring accommodation under the law in many places around the world.
Here then are some accessibility tools:
In the presentation from ADA Audio Conferencing – A program of the ADA National Network
One important point made was this:
For people with EHS, a wireless-free policy is required, as well as other accommodations mentioned in the presentation.
Here are a few of the slides from Accommodating Persons with Environmental Sensitivities: Challenges and Solutions (which is available to download from the link below):
Posted in Accessibility, Air Quality, Disability, Environmental Sensitivities, Human Rights, MCS/ES, Multiple Chemical Sensitivities
Tagged accommodation, EHS, environmental sensitivities, fragrance-free policy, indoor air quality, MCS, multiple chemical sensitivities