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Guest Blog: To conclude MCS Awareness Month: A blogger bares her soul

May 312011

As MCS Awareness Month concludes, please read my blogger friend Karyn’s terrific post about life with multiple disabilities, including Multiple Chemical Sensitivity.

By guestblogger Sharon Wachsler.

Sharon is hugging her former guide dog Gadget. Both are looking straight at the camera. Sharon is smiling, wearing a purple top and Gadget is black with a "beard."

Sharon Wachsler, who blogs at After Gadget where she shares her life after the loss of her service dog Gadget pictured here.

It’s the last day of May, which makes this the final day of Multiple Chemical Sensitivity awareness month. Appropriately, my friend, Karyn, who usually blogs about her assistance dog, Thane, has written a terrific post about life with multiple disabilities, including MCS.

She writes about how every day begins with uncertainty as to which disability will do what, and how that has affected her decisions in training her guide/hearing/service dog. This is a topic I really relate to.

She also explains why she tries to keep a certain level of privacy about her disabilities, yet was compelled to speak out now.

Karyn’s blog is Through a Guide’s Eyes, and the post is Different Ways for Different Times.

I don’t talk much about my disabilities in my blog because frankly I just want a place where I am seen for the inside pages as opposed to the book cover of the physical shell. That all said, I am beginning to feel the need to let down my guard as others have done. Perhaps its because by letting down my guard, I can share with you the kinds of training that can truly prepare one for the unknown- so here goes.

When you wake up each morning, you probably know what you are going to feel like, how much energy you will have, how your limbs will function, whether or not you can get to point B without smacking into a wall from vertigo or any other myriad of functions that as an able bodied healthy person you probably take for granted. This isn’t the side of the coin that I deal with however.

I have multiple disabilities and have for more years than not. I am a deafblind individual living with incomplete quadriplegia, complete paraplegia, MCS (multiple chemical sensitivities), low kidney function as a reminder of my chemo days, asthma that can rapidly spike to a level of it being hard to communicate secondary to a variety of triggers from my MCS, and a problem that to this day no one has the answers to. It comes on with minimal notice and can affect me in a myriad of ways- feeling like blood sugar is crashing or I’m going to pass out without typical treatments of such bearing any changes on the sensation, vertigo, loss of where I am in space, episodes of complete deafness and at the least greater level of blindness, confusion of how I got where I am- like being in a daydream but not having any daydream of thoughts to cause it. Its believed its linked to the cause of my blindness and to the cause of the further deterioration of my deafness but not the initial cause of that condition. I’ve accepted that possibility since it is viral in nature and the cause of my GI system roller coaster ride.

Please read it and share it. While her experience is unique, there are aspects of it that will resonate with people with many disabilities, and hopefully raise a little awareness for everyone about the disabilities they don’t share with Karyn.

Thank you, Karyn, for this excellent post.

~Sharon, the muse of Gadget (who also had chemical sensitivities), and Barnum, SDiT

P.S. Don’t think that just because May’s over I’m going to stop blogging about Lyme and MCS awareness. As far as I’m concerned, having Lyme, CFIDS, and MCS means hardly ever meeting deadlines. So, June is just an extension of May in my world. (Also because I have no sense of time.)

Sharon Wachsler is a freelance writer who blogs at After Gadget, where she shares her life after the loss of her service dog Gadget and now life with her service dog in training, or SDiT, Barnum. This post was originally published at After Gadget, titled Signal Boost: Guide Dog Partner with MCS.

City of Portland, Oregon, strives for a scent-free workplace

Posted by Susie

Feb 222011

The new policy will be classified as an “advisement,” but if a worker complains about a coworker wearing scent, a ban will be imposed for that work group.

Anna Kanwit, assistant director at City of Portland Human Resources

KGW.com, Oregon, reports Portland leaders approve anti-scent policy in city offices.

The new policy will be classified as “an advisement,” but if a worker complains about a coworker wearing scent, a ban will be imposed.

“If an employee comes forward with a sensitivity, then it’s a ban for that work group,” says Anna Kanwit, assistant director at City of Portland Human Resources.

But don’t you just love the people in the video who don’t give a dink about people’s health? I especially love the guy who says, “People should just learn to cope with things that might annoy them.” Oh yeah, I always get so annoyed when I can’t breathe or think properly because of someone’s toxic fragrance fumes.

It’s so sad that the city worker who supports the ban felt she had to stay anonymous with her statement.

By the way, YAY for unions working on this issue!

AFSCME union spokesman Rob Wheaton said they’ve been in talks with the city over the issue for years.

“If someone has a legitimate bonafide allergy to a perfume it does create some serious consequences for them,” Wheaton said. “Likewise on the other end of it I think employees can kind of get annoyed by not being able to wear perfumes, but overall this ordinance that they’re passing just codifies what’s already an existing practice.”

US Centers for Disease Control and Prevention issues indoor air quality policy for all CDC offices nationwide

Posted by Susie

Apr 072010

This is arguably the strongest and most important toxic chemical-free and fragrance-free policy in existence for the workplace.

CDC′s Roybal campus in Atlanta, GA.

The US Centers for Disease Control and Prevention, a federal agency under the Department of Health and Human Services, recently issued a policy on indoor air quality that will affect all CDC offices (owned, leased and rented) and more than 15,000 employees nationwide. Among a host of indoor air quality standards, the policy includes specific guidelines restricting the use of fragrance in cleaning and personal care products.

Housekeeping Guidelines

CDC will ensure that products used in the workplace, such as soaps, cleaning products, paints, etc. are safe and odor-free or emit low levels of volatile organic compounds (VOCs) to the fullest extent feasible. Only green cleaning products shall be specified and used within CDC facilities and leased spaces unless otherwise approved by the Office of Health and Safety. [...]

Non-Permissible Products

Scented or fragranced products are prohibited at all times in all interior space owned, rented, or leased by CDC. This includes the use of:
• Incense, candles, or reed diffusers
• Fragrance-emitting devices of any kind
• Wall-mounted devices, similar to fragrance-emitting devices, that operate automatically or by pushing a button to dispense deodorizers or disinfectants
• Potpourri
• Plug-in or spray air fresheners
• Urinal or toilet blocks
• Other fragranced deodorizer/re-odorizer products

Personal care products (e.g. colognes, perfumes, essential oils, scented skin and hair products) should not be applied at or near actual workstations, restrooms, or anywhere in CDC owned or leased buildings.

In addition, CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace. Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines.

Employees should avoid using scented detergents and fabric softeners on clothes worn to the office. Many fragrance-free personal care and laundry products are easily available and provide safer alternatives.

Further, the policy extends to enforcement. Within the document itself is clearly stated the process by which an employee may file a report about air quality problems through a questionnaire, and further still, who is responsible for overseeing the investigation:

Building occupants who experience irritation or symptoms that may be related to the quality of indoor air should notify their supervisors, and the OHS or local Safety Officer to initiate a complaint. BFO must also be contacted upon initiation of a complaint, to identify and/or review any potential structural, maintenance, or heating, ventilating or air conditioning (HVAC) issues. Building occupants must also complete the Indoor Air Quality Questionnaire (see Attachment B) in order to properly document the complaint. Each IEQ complaint poses a unique set of circumstances that will determine the investigative procedures used to resolve each IEQ concerns.

Office of Health and Safety/Designated Safety Officer Administers the Indoor Environmental Quality Program and serves as the primary coordinator and investigator for reported incidents involving IEQ hazards or conditions; educates CDC supervisors and workers; develops report findings and recommendations for corrective action; and reviews and updates to meet future needs and regulatory changes.

You’ll also be happy to see that there is a section on pest control. Although it’s not perfect, it’s far safer than the hazards many workers endure with ubiquitous application of hazardous pesticides, usually performed without notice: “Pest management, for both buildings and lawn care, will emphasize non-chemical management strategies whenever practical, and the least-toxic chemical controls when pesticides are needed. Integrated Pest Management practices must be utilized.”

Coming from the CDC, this is arguably the most important toxic chemical- and fragrance-free policy in existence for the workplace. In the words of former CDC director Dr. Julie Gerberding, the agency is charged with confronting “the challenges of 21st-century health threats.” It looks like the current CDC director, Dr. Thomas R. Frieden, believes this responsibility covers not only the general public, but CDC’s own employees and workplaces as well.

Creating nontoxic work environments is not just good for employees’ health, it’s good for the bottom line, too. Workers who are not being slowly poisoned by toxic chemicals on the job can think clearer, work more efficiently and be more productive. Employees who suffer toxic chemical sensitivity, asthma and other respiratory ailments will take less sick days. People who are prone to developing health problems triggered by toxic chemicals will be safer; in fact, everyone who works in CDC buildings will now be safer.

For those of you with Multiple Chemical Sensitivity who are currently battling it out with your employer over hazardous chemicals in your work environment, in addition to discussing your rights to safer accommodations under the Americans with Disabilities Act, you might want to print out this new CDC policy and give copies to your boss, your CEO, and your human resources director. Explain to them that the experts at CDC understand that indoor air quality is greatly compromised by a host of toxic chemicals, including those from cleaning products used by maintenance personnel and personal care products used by employees. Tell them that this recent CDC policy is indicative of the way trends are going, and any company getting on board now will be spared future costs caused by condoning an unsafe environment for employees.

This policy is incredibly good news– use the clout and expertise of this CDC policy to strengthen your arguments for a toxic chemical- and fragrance-free work environment.

Here’s the pdf of the policy.

Here’s the pdf of the questionnaire to be used when CDC employees file a complaint about air quality.

Thanks to Harry Clark for obtaining these documents from CDC and for sharing them so freely!

Guest Blog: The risk of developing Multiple Chemical Sensitivity from exposure to photocopiers and laser printers

Posted by Guest Blogger

Feb 132010

Some persons suffering from Multiple Chemical Sensitivity may have developed their conditions or worsened them due to exposures to the toxic chemicals given off by photocopiers and laser printers in their office jobs.By guestblogger M.R.E.

The following is information for the readers of The Canary Report concerning potential risks of exposure to photocopiers and laser printers. I have suffered a devastating respiratory condition from exposure to these types of machines, and so I am trying to raise awareness about this health hazard to hopefully receive feedback and get in touch with other persons who suffer the same.

Due to exposure to photocopiers and laser printers, I have suffered a devastating respiratory condition which produces in an extreme degree: difficulty for breathing, chest pain and oppression, fatigue, cough, mucosal dryness, inability to sneeze and plenty of disturbances in the throat, nose, mouth, eyes, skin, stomach and other systems plus an extreme, lasting intolerance to all chemicals in the air. After a lot of troubles it was diagnosed in two university hospitals as non-specific bronchial hyper-reactivity and Multiple Chemical Sensitivity (MCS). The syndrome was caused by the irritant vapors released by a photocopier and a laser printer in my jobs and this appears very obvious from the full details of my story, too long for this page. Although my illness was initiated within 24 hours of intense exposure to these gases, it has not been officially recognized as occupational for any purpose. As many other sufferers with MCS, I have lived a nightmare of sickness and social neglect, but thanks to my family, who financially and psychologically supported me, I did not fall into marginality and eventual tragedy.

From my own experience of nearly three decades with this problem I see that the following points should be carefully taken into account:

Request for help composing an advance letter to health care specialists

Posted by Susie

Feb 012010

What should be included in a letter to a physician that arrives before WE do?

Elaine Willis, who has Multiple Chemical Sensitivity and a host of other illnesses, contacted me for help in composing an advance letter for her health care specialists. She’d love to have input from as many people with MCS as possible. Please leave your thoughts in the comment section.

My family doctor (primary care physician) has asked that I prepare the letter that will go to specialists prior to my first arrival. It needs to elucidate in few words what to do to make my visit safe. It must also explain MCS (Multiple Chemical Sensitivity) to a physician who may have had no education about or exposure to a patient with the kind of symptoms I experience. My symptoms can be mild (for me) which may include coughing, asthma, brain fog and increased ataxia (you see I already I have ataxia – the hereditary kind). Or, they can be medium, slurred speech, severe ataxia, altered blood pressure, complete inability to focus or answer questions, stuttering, poor word-finding skills and dizziness. And of course, the biggie… anaphylaxis… and it happens too often.

So, my desire with this post is to engage the assistance of others with MCS. What should be included in a letter to a physician that arrives before WE do? First appointment of the day? No waiting? This is a brainstorm – so all ideas are accepted. I will choose the ones I want for my letter and post it. Maybe it will be useful for others, too!

Please leave your suggestions here in the comment section. Thank you!

~~~

Poster for fragrance-free hospital care

Posted by Susie

Jan 262010

This poster was designed as a public service project for patients requiring in-hospital care at hospitals that are still lacking a proper fragrance-free policy for the staff.

The poster comes in two versions: one for Multiple Chemical Sensitivity and one for Severe Allergic Asthma. Click here to download either one in print resolution.

I think the posters are FAB, but I knock off a couple points for using the word “allergen” in the MCS poster. As we all know, MCS is not an allergy, it does not have any of the physiological markers of an allergy. But that criticism aside, this poster rocks. I especially love the part where it says, “Patient is not a Fragrance Crash Test Dummy. Don’t just ‘come & see if it affects the patient.’”

Perfume blogger dismisses concerns from a member of our community

Posted by Susie

Jan 192010

I love it when people who have absolutely no medical expertise make flippant comments about allergies and sensitivities to chemicals.

Now Smell This: A Blog About Perfume reports on Perfume is the Rodney Dangerfield of the Art World. Angela writes:

I look forward to the day when saying “perfume stinks” is seen as a sign of ignorance. Maybe, instead, that person will lean toward a friend discreetly wearing scent and say, “Your perfume is — interesting. Tell me about it.”

In the comments she writes:

“I know a few people, too, who claim to be allergic to fragrance, but I think they’ve just had a bad reaction standing next to someone soaked in something particularly loud. All of these people can wander into a Marriott or a Hilton, where fragrance is pumped through the air, without a hitch.”

Excuse me, who’s ignorant? I love it when people who have absolutely no medical expertise make sweeping, flippant comments about allergies and sensitivities to chemicals. The truth is many of us with Multiple Chemical Sensitivity cannot wander into a Marriott or Hilton without risking our health. Neither can we visit malls or casinos or walk through an airport without a mask. Scent marketing blocks our access to banks, office buildings and even hospitals.

Now Smell This is a popular blog, and at about comment #180, a member of our community, Elaine Willis, left a comment for Angela:

People who CLAIM to be allergic to perfume most likely are! [Commenter] Klytaemnestra does not understand that someone can develop the sensitivity over time. Although I can appreciate the discussion here, I hope it can be appreciated that for 3 out of 10 people, perfume is a health hazard; and for a smaller but growing number – perfume and other petro-chemically enhanced products, are life-threatening.

Angela obviously thought Elaine was over exaggerating, and so flippantly replied: “Oh my! 3 out of 10 people! I guess I count myself as one of the lucky ones. I’d sure hate to be allergic to perfume when the world is awash in scent–everything from cleaning products to buses to malls and hotels seems to be scented these days.”

When another commenter recommends “a more judicious approach in putting perfume or scent into everything and everywhere,” Angela pronounces,”I think a lot of people don’t even notice it anymore, yet they squawk when they smell it on a person.”

The truth is that the toxicity of modern fragrance formulations is a serious health issue for everyone, not just people with Environmental Illness and/or Multiple Chemical Sensitivity.

Saying “I think a lot of people don’t even notice it anymore” about what is a serious disability rights issue is 15-20 years behind the times. In America, Multiple Chemical Sensitivity, which include sensitivity to modern perfume and fragrance, is recognized as a disability by the Social Security Administration, Housing and Urban Development, and the Americans with Disabilities Act, among others. Click here for a list of published peer-reviewed articles documenting the “realness” of MCS.

This chemical sensitivity condition is not rare and the numbers of people who have it are growing. A national survey found 11.2% of respondents reported increased sensitivities to common chemicals and 2.5% had been medically diagnosed with MCS. Perhaps even more relevant to this discussion here is that this same survey found 31.1% of respondents said that sitting next to someone who was wearing a scented product was “irritating.” So going without perfume in schools, hotels, banks, airports and other public places is a good idea because it improves air quality and reduces potential harm to others as well as yourself.

Toxic modern fragrance is a health issue that affects everyone and a disability rights issue that affects people with respiratory illness including people with Multiple Chemical Sensitivity. Clean air is everybody’s business, and seeing this issue as a fundamental health issue is the only way we will ever get consensus on taking the necessary action to protect everyone.

Now Smell This is a blog with a lot of readers, why not go an tell Angela how you feel about a product made from unregulated toxic chemicals choked with phthalates known to cause reproductive harm and petrochemicals known to trigger asthma, migraines, respiratory distress, central nervous system problems and more. Tell her how you feel when your body is exposed to perfumes in public places and your eyes burn and itch, your throat and limbs swell up, your skin burns, or a migraine is triggered.

I would have forgiven Angela her blog topic had she not been so flippant when Elaine told her that perfume can indeed be life threatening. I wish Angela could experience Multiple Chemical Sensitivity for just one day, it might make her have second thoughts about flipping off someone trying to tell her perfume can be extremely dangerous for a large part of the population.

Photo credit

New website launched on fragrance-free living

Posted by Susie

Jan 152010

New website warns of the dangers of toxic fragrance in personal care products and other consumer goods.

A new website just came up on my radar about Fragrance-Free Living. It’s run by former auto mechanic David Tywoniuk, who now owns an auto body shop in Edmonton, Canada. He and Judy Sterling put the website together.

Here is a really good reason as to why you might want to try “Fragrance Free Living”. Did you know that the ingredient “Fragrance” used in most of the above products can indicate the presence of up to 4,000 separate, mostly man-made ingredients? Many compounds in fragrance are human toxins and suspected or proven to cause cancer. Symptoms reported include: headaches, dizziness, rashes, skin discolorations, violent coughing and vomiting and allergic skin irritation. Observations by medical doctors have shown that exposure to fragrance can affect the central nervous system, causing depression, hyperactivity, irritability, inability to cope, and other behavioral changes. 100% of perfumes contain toluene, which can cause liver, kidney and brain damage as well as damage to a developing fetus.

Ask Umbra on Green Cleaning

Posted by Susie

Jul 232009

Green up your act!

Going green doesnt mean giving up on being clean. Grist advice mistress Umbra Fisk offers up alternatives to chemical-laden cleaning products.

Link

Choosing better body care products

Posted by Susie

Jun 262009

Under-regulated chemicals are causing concerns for human health and the environment, whether they seep through your skin or wash down your drain.

The Environmental Working Group continues its Healthy Home Tip series with “Choosing Better Body Care Products”:

Dear Supporter,

Most people use around 10 personal care products every day with an average of 126 unique ingredients. We’d like to believe that the government is policing the safety of all of these mixtures we’re putting on our bodies, but they’re not. Instead, these under-regulated chemicals are causing concerns for human health and the environment – whether they seep through your skin or wash down your drain.

We think you deserve better than that. So we’re sending you our Healthy Home Tip Series to make it easier to safeguard your family’s health. This month’s tip is: Choose better body care products.

What makes a body care product “better”?

Better products meet their claims and are free of ingredients that could harm our health or the environment. Labels might claim that a product is “gentle” or “natural,” but with no required safety testing, companies that make personal care products can use almost any chemical they want, regardless of risks. So, always read product labels – especially the ingredient list – before you buy.

Learn how to choose better body care products

We make these choices as simple as possible on our Healthy Home Tips page, where you’ll learn:

How to read a label

How to shop for the grown-ups in the house

How to find the safest body care products for your kids

Tell your friends about our Healthy Home Tips

We know you’re not the only one who wants to choose better body care products. Tell your friends about our Healthy Home Tip Series so they, too, can be informed when faced with rows of under-regulated products at the store.

Talk to you in a month when we discuss our next Healthy Home Tip: going organic and eating fresh foods.

Thanks for reading,

Lisa Frack
EWG Online Organizer

PS: Last month we introduced this Healthy Home Tips Series. Click here to read about it.