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5/17/2009

MCS Awareness!



I just discovered that May is awareness month for yet another illness I care deeply about: Multiple Chemical Sensitivity.

For a fantastic source of info on MCS, I always refer readers to Susie Collins' blog, The Canary Report.

For a post specifically about awareness month for MCS, see: MCS Awareness Month, bad air, and chemical exposures.

MCS is a big part of my life. Walking down the soap/detergent aisles is out of the question. Being anywhere near cigarette smoke is not possible. Reacting to people's perfumes and cologne is common. Heaven forbid I need to use a public rest room these days since it's almost a guaranteed exposure to "air fresheners". (They typically contain toxins that cause cancer, contain neurotoxins, and contain endocrine disruptors... so they are not healthy for anyone).

I have a long history of fainting due to exposures that trigger my MCS to kick into overdrive.

I have blogged previously about MCS (just use my search engine to find past MCS posts). Susie's blog mentioned above, though, is my go-to source for MCS information.

Susie is a wealth of information on MCS! I highly recommend checking out her blog to learn more about this serious illness that's affecting more and more people.

MCS awareness is much-needed. Please help me in supporting the MCS awareness activities by following Susie on twitter:

Her twitter address is: @TheCanaryReport
The #MCS hashtags pertain to Multiple Chemical Sensitivity

Please help us spread the word about MCS, a very poorly understood condition that can be debilitating and disabling. I would appreciate as much help as possible with supporting Susie's efforts re: MCS Awareness.

There are so many awareness campaigns happening this month that it's very challenging for me to keep up. I would appreciate any help at all. Supporting the MCS cause on twitter and checking out Susie's outstanding blog would be enormously helpful.

Thank you!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

13 comments:

Susie Collins said...

Jeanne, thank you for all your support and this very generous post about The Canary Report! Much aloha and appreciation to you!

Jeanne said...

Susie,

You are the queen of support. :) I feel guilty I didn't post this sooner but I didn't know about it until now. I am very overwhelmed trying to keep up with everything lately. I'm just glad I saw it in time.

Jeanne
xo

Yaya said...

Oh good, I've been wanting that link to the Canary Report. Thanks!

Yes, it seems that May is a big month for things.

Jeanne said...

Alicia,

Yes, The Canary Report is just amazing!!!

Yes, there is a lot going on. I can see that I will need to seriously pace myself as I have yet to recover from Endometriosis Awareness Month in March!

Jeanne

Laura Dunks said...

Hey,

I wouldnt say I have MCS but I have quite bad allergies and anything perfumed will give me a headache, anything aerosol like body spray or smoke gives me asthma,a lot of shampoos and soaps and washing powders make my eczema come up really badly.

So I know how you feel to be somewhere and have that kind of problem. I told my year 9 english teacher that her perfume was making me ill after i did an exam and had the worse headache and asthma attack in class. Its rubbish!

Laura
~X~

Jeanne said...

Laura,

You bring up an important point in that some people may have sensitivities but not have MCS.

There is a distinction between Multiple Chemical Sensitivity and chemical sensitivity. (Needless to say, this is confusing).

I recently asked Susie about it because I wanted to make sure that I am wording things properly. (Susie is my go-to person for MCS and related issues).

Here is what Susie said when I asked her about the difference between MCS and chemical sensitivity:

"Multiple Chemical Sensitivity is a very specific illness; chemical sensitivity is a broad-based term not necessarily meaning the person has MCS"Susie's blog is an amazing resources for MCS. Here is Susie's "What is MCS?" post:

The Canary Report's MCS definitionAs far as the items you mentioned, many people are sensitive to them... body spray, smoke, shampoos, soaps, perfume, etc.

Sadly, many personal care products contain toxins such as endocrine disruptors, neurotoxins, and carcinogens.

Some people react more than others but these items are unhealthy for ALL people.

As far as the smoke, obviously there's now plenty of research about the dangers of second-hand smoke.

Many people react with headaches like you. Many also have asthma problems connected to exposures.

I highly recommend the Environmental Working Group's "Skin Deep" database for finding personal care products that are safer options.

Like you, I have had eczema problems that dermatologists have connected back to personal care products I was using and allergic to (unbeknownst to me).

The Skin Deep database link is located in my blogroll and it's really great.

It's unfortunate that our society isn't better educated about the effects of these toxic substances.

For goodness sakes, you should be able to take your exam without a perfume-induced headache and asthma attack!

It really is terribly unfortunate that there is not more awareness of this issue... especially as more and more people are developing symptoms.

Jeanne
xo

Laura Dunks said...

Thank you very much for the link I will definately have a look to see if there are any products I can buy locally which are safer.
I will also when I get round to it try and do my bit to spread the word about the site etc...

I have looked at Susie's blog and I must say I have educated myself about this illness which I knew little about!!

Well done you for everything you support!

The incident in the exam happened nearly 9 year ago. But I had an incident happen only 2 years ago on a flight back from Cyrpus when this woman of 40ish started tarting herself up for whoever was picking her and her daughters up. She sprayed huge amounts of perfume and she was only the seat in front of me. I got upset andasked her to stop saying that I had asthma. 20 minutes later while im having a fairly bad asthma attack and crying to my mum cause I was so upset her and her eldest daughter who was about the same age as me sprayed the perfume again and said that if i knew i had asthma i should sit at the front of the plane so that i can smell it. Actually the air on a place circulates so it doesnt matter where you sit.
Stupid ignorant people. I told them that people with severe asthma could die from what they just did and the girl said well I have asthma and Im not allergic to it so you must be wrong. I thought about telling them that actually i was studying medicine and I knew full well that people with asthma have different allergens or triggers but by this point i was so upset all i wanted to do was punch them. So I left it but there is such ignorance out there it is so sickening. Mind you I have enountered worse since realising I have M.E/CFS.

Laura
~X~

Jeanne said...

Laura,

Yes, I'm sure you'll like the Skin Deep link. It's great.

Thank you! MCS awareness is so important. The average person has no conception of what extreme measures MCS patients need to take to avoid exposures that would make them very ill.

Yes, Susie's site (The Canary Report) is just loaded with info!

Thank you!

I am so sorry about what happened to you on that airplane with the perfume. That is just TERRIBLE. I wonder how that woman would feel if she suddenly couldn't breathe? The ignorance displayed in the comment about sitting elsewhere when everyone knows airplanes have recirculated air is amazing.

You are absolutely right that some people could go into anaphylactic shock and die from something like that. (If you search my blog for MCS, you'll see another post where people related stories like this in the blog comments).

Yes, the ignorance of M.E./C.F.S. is terrible too.

I'm sorry you had to go through that. I've fainted from perfume before. So many people just don't get it.

One of my MCS blog posts has the story of what happened when my sister accidentally wore perfume and fragranced hair products last Thanksgiving. I think it's in the blog comments of one of my MCS posts (rather than in the post itself).

Hopefully awareness campaigns will chip away at the ignorance by shining light on the facts.

Take care,

Jeanne
xo

DebbyBruck said...

Dear Jeanne ~ You have really created a wonderful web page filled with information to help those in their search for healing and the general public.

thank you so much
Debby

Jeanne said...

Debby,

Thank you for your kind words. It's always nice to see your smiling face on twitter. :)

Jeanne

Melissa Ralston said...

Jeanne,

My mother, although not officially diagnosed, I believe has a strong case of MCS. My mom works at Walmart which makes matters worse. Whenever someone comes through with pot-pourrie (sorry can't spell the word for the life of me today!) or fabric softener sheets, you can see large welts start to develop on her body. She had similar welts from using the regular deodarants and had to switch to using the body crystals. My perfumes bother her quite badly, although one particular scent that I have isn't so bad for her. So once again, there is a lack of understanding on other people's parts as they don't understand why she will react to one scent and not to others. Sort of like us with endo and food allergies, why sometimes we will be plagued with symptoms while at other times, not so much.

I've told you before of my experiences with perfumes and how they have changed throughout the years. My old favorite perfume used to be Obsession by Calvin Klein. But now, if I walk past someone wearing it, it gives me an instant migraine that is crippling. I think it highly unfair of some stores to have their cosmetic and perfume counters at the entrance. I no longer shop at those stores as it means a nightmare of a day for me.

The one thing that is difficult for me though is being in a public place and having strangers within close proximity that have one of the scents that my body reacts to. The doctor's office is the perfect example of this! How do you politely get up and switch chairs when some little old lady approaches you who happens to be wearing one of the scents that you can't stand? I can remember a recent ER trip where I became much sicker after having to sit next to these types of people for several hours. At the end, it felt like I was almost gasping for clean air again!

Anyway, just thought I'd share my experience with being chemically sensitive.

Thanks for all the awareness activities that you do for the multiple health issues out there!

Jeanne said...

Melissa,

My reply is not fitting in Blogger comments. Apparently, they have instituted a character limit. Lovely. I know I’ve had longer comments than this before but it looks like I will need to split this one up…

My sympathy goes out to your mother whether she has chemical sensitivity or multiple chemical sensitivity because the last place in the universe I would want to work would be there. Years ago when I actually attempted a quick trip there once in a blue moon, I would find myself leaving the store without getting what I went for because I reacted so strongly to so many things. That is the most dangerous single building for me to be in. It makes sense that the potpourri and fabric softener sheets cause reactions. Both contain fragrances (which can themselves contain thousands of untested chemicals) and fabric softener sheets even contain toxins like carcinogens. I too had to switch to special deodorant years ago. It was one of many things my dermatologist advised me to switch.

Perfume is a loaded topic for me. The reactions I have had to perfumes is a lengthy list and some reactions have been quite scary (trouble breathing, losing consciousness). While there is one particular perfume that your mom doesn't react to now, the fact that she is so very sensitive makes it likely that this could change in the future. The more exposures she has, the greater the chance she'll react to that in the future too.

The fact that she doesn't react to that scent in the dramatic way she reacts to other fragrances doesn't mean it's safe for her even now.

You are right that people don't tend to understand why a person reacts to one scent and not another. Each fragrance is different from others. The number of chemicals and combinations of them in perfumes and fragrances is mind-boggling.

When a person's body is particularly overloaded with toxins (from exposures to things like cigarette smoke, building construction, personal care products, candles, and so much more) they are likely to react more than at times when their body has had some time to recover from exposures and practice avoidance of known triggers.

Obsession is one of those perfumes that literally makes it hard for me to breathe. In fact, it was one of the first fragrances that had this effect on me years ago. A reaction to something like Obsession could last days for me or could trigger a sinus infection lasting weeks.

(Separate issue to MCS, the dermatologist tested me as being allergic to fragrances. Some people, like me, have allergies and MCS both).

Perfume that I wore, many years ago, with no problem would make me very sick indeed now.

End of part 1. Part 2 coming right up...

Jeanne

Jeanne said...

Melissa,

Part 2 (darn that Blogger!)...

The way my doctor explained it to me is that there's a threshold theory... where a person's body can only take so many insults for so long and then sensitivities start to crop up. It had been many years on too many prescriptions to count before I started reacting to fragrances, smoke, vehicle exhaust fumes, etc.

Between the prescriptions I had taken and the personal care product exposures I had before I realized the products I was using were about the worst things I could be using, I think my body was set up by my early 20s to start having reactions. (If I had known back then what I know now)!

What most people don't realize is that the items a typical MCS patient reacts to are items that are unhealthy for ANYONE. The MCS patient is simply sensitive enough to be able to smell trouble (literally) and/or experience other reactions to these items that others can't.

The fact that non-MCS people don't react the way MCS patients do does not mean their health is not being affected in the long-term. The key is that the reactions are to chemicals/toxins that are simply not healthy for ANYONE.

The reason MCS patients are compared to the canary in the coalmine is that canaries were sent into the mines to test for safety. If the canaries flew into the mines and safely back out, the miners felt safe going in. If the canaries dropped dead, the miners knew not to go in there! Well, MCS patients are like the canaries in that the items they react to invariably end up testing in research studies as harmful in some way (carcinogens, endocrine disruptors, neurotoxins...)

MCS patients will react to items for many years and then, lo and behold, a study will come out verifying that the item contained a substance (or many!) known to be harmful to human health!

I know exactly what you're talking about with the waiting room scenarios. I have reached the point where I CANNOT worry about whether someone thinks I'm rude. Sure, I may browse the magazines to make it look like that's why I stood up and then simply take a seat as far as possible away from the person.

However, I will NOT keep sitting there, having the reeking perfume spill onto my clothes so that I smell it until I go home and change. Frankly, it wouldn't be safe for me to drive home from the doctor after being exposed to that! I have taken it a step further, though. I have reached the point where there have been times that I literally wait in the hallway. For example, my last trip to the pelvic pain specialist involved someone wearing a scent I could not be anywhere near. So I simply informed the receptionist discreetly that I was going to need to wait in the hallway. Do I worry they receptionist will think I'm off-kilter at times like this? Yes. Do I subject myself to reactions that could include passing out or having breathing trouble? Heck no.

I can't worry about what anyone thinks. If people think I'm rude to not sit near them, it's no match for me thinking they are rude to wear a bottle of perfume.

Thank you for sharing about these important topics! The more awareness we can create for this the better. MCS cases are growing in numbers. More and more people are experiencing this serious illness.

In the meantime, public places like stores are ramping up their usage of "air fresheners" that give some people the illusion of "clean" when in reality those automated "air fresheners" in rest rooms are spewing toxins into the air that harm everyone who inhales the mist!

Thank you.

Jeanne

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