Talking Allergies

I know there are a lot of resources out there for allergic individuals, parents of allergic children, schools, daycares.... but I feel there is really nothing out there to raise allergy awareness on a major level. I'm talking about the masses... not just the people and establishments that have to deal with allergies. There are just so many people (from all walks of life) who just have no idea!!! Sometimes I feel so drained of always having to repeat the same message wherever I go. I feel like I have to provide an information or training session every time someone expresses ignorance. I just wish allergies was a topic that people knew about and understood, especially about cross-contamination, the fatality of it, etc. so the burden wouldn't always be on our shoulders.

I think a PSA (public service announcement) would be a great idea!! It could air on kids' tv stations, etc. But who would be willing to take on something like this and find funding for it?? Anaphylaxis Canada.?? Who would I approach to offer this suggestion?

Karen or Gwen... or anyone else, do you know if PSAs are being discussed? Or if they have been ruled out, what are the reasons?

Any other ideas for getting the message out to the masses?

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

I don't know if PSAs have been discussed and/or ruled out, Storm. I suspect it's a question of $$$ that it hasn't happened, but that's just my own gut feeling. There isn't much money in Allergy Land, unfortunately, from what I've seen.

Maybe it's just a matter of time and momentum. Think of how far breast cancer awareness and non-smoking campaigns have come. I'm sure that 5-10 years ago the people who were involved in those movements were as frustrated as you are now.

Why do so many people not get it?? To be honest, I think it's partly a question of numbers. Those with severe allergies are still in a fairly small minority, and if something doesn't directly touch people's lives, I don't think those people not affected by allergies will take the time to try to get it. Which I personally think is human nature - or maybe just a statement of how busy we all are. I don't know. How many of us here have taken the time to become fully aware of the impact of diabetes or Crohn's disease or multiple sclerosis or muscular dystrophy or whatever on those who are dealing with it? Probably not too many. If it doesn't affect us or someone we love directly, why would we? We've got busy lives and we're just trying to deal with our own stuff. And I think that's basically how the world works. Maybe it could be called "selfishness by necessity" (a new term I just coined ).

Of course, that doesn't account for all those friends and family who should get it. I guess that's a whole other thread....

In saying all this I don't mean to say that your idea isn't a good one - I think it is. I agree that more awareness would be a really good thing. I just think that the reason so many people don't "get" allergies is because it doesn't affect them directly, and so it just isn't on their radar.

Hope I didn't go overboard with my answer! It's something that I think about a lot - why people don't "get it".

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

I think the problem is in the fact of it's a minority thing, and unless you live with it you just don't know the trials of it, sadly. But that can be said about anything that people have to deal with which is outside of "the norm" everyone has something that they are well educated about because of a need for that kind of education through personal experience. if you don't need to know it in your own worldview then it's nots something that you will seek out.

being on this forum has opened my eyes very much to the non-evirnmental and chemical side of the allergy world. where my problems lie for example. i came here because of my own problems with allergies, and am facinated by the other side of the coin! but if i had no allergies what so ever this would not be in my frame of referance!

heck! i am reconsidering my usal work lunch of PB&J sandwhiches on shift because i've read of so many problems with cross contamination! i work in hockey arena canteen and often times i have just taken a bite of my sandwhich and i serve a costomer, if they are only ordering a drink (bottled) or asking for change i don't think to wash my hands, since these are things which which have thier own germs, and i won't be "adding" to them so to say. but in some cases it could. but a week ago i would have NEVER thought about it. i work in a place geared toward children, and they are the most likely to have these kinds of allergies.

i know what products i sell which are "peanut safe" from parents tellling me what they trust, but have never thought about what i ate while i am on shift, and now i will. i certainly don't think of the myrads of other food allergies which are not getting press. soy for example is a staple food in my diet as a lactose intollerant vegatarian!

people don't get it because they don't need to know it. personally my big hurtal right now is my eye condition which causes me to se see double. i posted that on here and someone told me to adjust my internet settings. how can i adjust the colour combination because that is part of the problem. i can easily adjust the size of text. but my problem is that a lot of things that seem visually stunning effect my double vision. if you've never had to deal you'd never think of this as a programmer. just as so many of us "allergy ignorrent' for a lack of a better word don't get the food allergies thing.

one thing i do have to add to make this to end of a VERY postive note. being in food service industry for going on three years (please someone fix my eyes so i can get a real job!!!). is that costomers with food allergies are the NICEST about their concerns about what is in what they ingest. these people COULD DIE if they have somehting cross contiminated, and they are all appolgies and very friendly and willing to educate me on their allergy. while people who CHOSE not to eat something for diet, personal, or relgious beliefs, are truely offened when you don't "get" why they are offended by a restauant, canteen or company's policy on what makes them a vouluntary minority!

I think that's what bothers me so much.... the fact that not enough people have allergies so the consensus is that it's not worth disseminating the info on a wider scale. I wonder... is this what the allergy organizations think or the funders??? I just don't agree with that. I also don't agree with the perception that if they are not directly affected by allergies, they need not take the time to understand the issue. If more parents of non-allergic kids were better informed on the seriousness of allergies, it would make things easier for the allergic children and their parents (at school, extracurricular activities, parties, get-togethers, etc). This also applies to food service workers, airline representatives... basically anyone who works with the public. Maybe I'm being oversensitive, but I am really sick of getting that blank stare of complete ignorance when allergies are mentioned. Even just the basic info would help when dealing with the issue.



I don't know anyone with those diseases and while I may not be fully aware, I do have basic knowledge, probably because those diseases have been discussed in the media, PSAs, telethons, etc... or I worked with someone who had one of the diseases. My point is that the PSAs are more of a tool to raise awareness, not necessarily provide exhaustive info on allergies. Then it's up to the person to research the subject or ask questions.... but it would still go a long way in helping the general public understand that people who live/deal with allergies are not overreacting, obsessive, unreasonable, demanding, etc. Perhaps this is the bigger issue... the negative perceptions. Most people will not understand the seriousness of it and just look at you as if you're obsessive-compulsive or something. It's not that way with other diseases. I was diagnosed with Graves' Disease (overactive thyroid) over 10 years ago. When people didn't know what it was, it was easy to explain. Not everyone understood what I was going through or showed compassion (some people's first reaction was to take two steps back... as if it was contagious!) but most people "got it" and realized that it affected my energy levels, concentration and eyesight.

Unnlike thyroid disease, allergies affect more than what is going on inside your body... it's how it is perceived (and misunderstood) by others, how children have to deal with the issue at school, how people have to deal with the issue with their co-workers... or even total strangers eating on a bus, wearing perfume, etc. All this calls for a wider dissemination of basic info and greater awareness.

Or am I just being too idealistic? If allergy organizations, government or those who understand the issue can't suggest ways to raise awareness on a wider scale or even agree that it should be done, then I guess it will never happen. I know a big part of living/dealing with allergies is being your own advocate, in your own community and social circles, but I still think raising awareness on a major scale with the non-allergic population would go a long way.

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

In A Street Car Named Desire, Blanche states, "I have always depended on the kindness of strangers." While we don't mean it in exactly the same way as she did , we too depend on the kindness of strangers.
We want to bring attention to our cause but at the same time do not wish to make waves. We are aplogetic for our condition, as if we had any choice in this.
Others seem to percieve that our requests are based on a whim. Seemimgly wholesome foods (natural whole foods) are being touted as dangerous. Milk? Wheat? Fish? These foods are often referred to as "the staff of life"
(http://www.bartleby.com/61/32/S0693200.html ), these foods are referred to in the bible. It is easy to see how people can find this unbelievable.
Anaphylaxic allergy, for food or otherwise is a very really medical condition with fatal consequences if it is not taken seriously. If others do not respect us it is discrimination pure and simple.
Yet, we are unable to make waves.
Hmmm

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Good thread! Karen's newly-coined phrase "selfishness by necessity" reminds me of one of my very favourite literary quotations. This is from George Eliot's _Middlemarch_:



I also think that for a lot of people anything that has to do with illness, disability, mental illness, etc. is really scary and so it is kind of a psychological defense mechanism to develop (perhaps unconsciously) blind spots in relationship to these issues. (And most of us probably know stories about people who strongly suspect that they themselves have medical problems which could very well need prompt attention but don't do anything about it until friends and family members *make* them go to the doctor.) Kind of like how we don't like to talk about death. (This is how I try to explain family members who don't get it.)

Of course, this is all the more reason why we need a public relations campaign. Although I think that more people are becoming aware.....I do think that allergies have an appeal because they seem like something out of science fiction. Also, the whole theory about allergies being a 20th and 21st century epidemic really appeals to environmentalists....or even anyone who is concerned about the effect of toxic chemicals, etc. So there are aspects about allergies that catch peoples' attention.

I've been feeling for awhile that I ought to send out an email to friends and family with some basic medical facts about anaphylaxis and also to talk about my experiences + add links to a few websites and sources of additional info. But I haven't...in part because it would feel like an attention-getting move, and I'm concerned about it seeming odd. Also, some of the experiences of my family *are* often viewed with skepticism by many in the medical profession...I feel like I can hardly recommend that new website with the new guidelines for managing anaphylaxis because two people in my family need additional precautionary measures.

My one sister had a couple of contact reactions which involve significant hives + breathing difficulty + one time other systemic symptoms (but the one time, she also inhaled steam from hot dishes to which she is allergic so that might have contributed). And I know she reacts when nuts or peanut products (among a few other things to which she is anaphylactic) are being consumed in her vicinity because she has reacted even before she realized that that was the cause. (there was an incident at the spring One of a Kind show in Toronto--her lips started itching and then she noticed someone nearby eating chocolate with nuts. Nuts isn't the only trigger---hot fish and egg dishes are as well.)

I did actually send out some info. by email to one person I've known for years before attending an event where I'd be eating. I thought someone there should know that I carry emergency medication with me and why. (She knew about the allergies, but I had never discussed anaphylaxis with her, and I could tell that she really didn't really understand.) I'm not really sure how the email went over....and it felt really awkward.

dustytiger -- I have to say that while my family is only dealing with peanut/nut allergies - this forum also opened my eyes to the countless others who are dealing with many other allergies besides nuts. It caused us to see the "larger picture" of dealing with allergies. Prior to finding this forum we used to eat in public places, not even thinking of others' allergies (sounds crazy given that we're dealing with allergies ourself) but I think it's human nature to be somewhat self-absorbed (and not in a malicious way). When you're eyes are opened to others' stories - the lightbulb goes on! We never eat anything in public places that aren't designated as food areas (picnic tables, etc.) and in the process explain to our son that we have to be considerate of all people dealing with all allergies. It's great that this forum has caused you to rethink some of what you do - and helped change your perspective and actions in relation to others. This will also help spread education about life threatening allergies! Thanks!
I think that PSA's about allergies would be awesome! I agree that people only have time and energy to deal with what's directly affecting their lives (prior to my son's diagnosis, I too was one of the many uninformed!) But I have to say, I did a major victory dance when I saw Quaker's ads about their new "peanut free" granola bars, simply because I saw it on prime-time TV and saw it as a spot light on "allergy awareness". I do think that PSA's or "edcuation-type" announcements/commercials geared to allergy awareness is worth the dollars. It would bring the topic into people's radars and at least shine the light on a subject that deserves more attention. For example, M&M Meat Shops have their yearly BBQ day and have all the proceeds donated to Crohn's and Colitis. I'm sure a lot of people said -- what? What's Crohn's? Perhaps it caused them to educate themselves? Perhaps not. But at least it's put "Crohn's Disease" in their radar and the next time they hear someone talking about it, it's not a completely foreign topic. Baby steps -- with each person that is educated, made aware, to the point where they are motivated to change what they do (like you dustytiger!), it's all a victory for the allergic community.

Great posts, everyone!

Susan, I agree about the apologetic thing... people with allergies don't want to ask for too much because they don't want to seem pushy or alienate people and don't want to be perceived as violating people's rights to eat what they want or wear the scents they want. Food is a personal thing... and it is hard to change perceptions about what is considered wholesome and healthy could kill some people.

But I think there's a fine balance. There are ways to educate without being perceived as "radicals". I think raising awareness is key, especially through universally-accepted media such as TV.

I find it sad that the only time allergies get attention on a national and international scale is when some poor child dies. There has to be other ways to get the message across and it is up to us to find these ways. We can't just sit back and wait for another Christina or Sabrina to happen!

First we need to agree that allergies is a big issue and not all allergens will be the focus. I know there are people allergic to more than just the top 10. And I know peanut allergies seem to be the only ones that get attention.... but we have to start somewhere. Sometimes I get discouraged because there seems to be a lot of "in-fighting" in the allergic community... such as "why do peanuts get all the attention?", etc... But I think that any type of awareness-raising on allergies is a good thing and will pave the way to better understanding of all foods and substances.

I also want to add that I don't think peanuts should be the sole focus of the PSA... I think a variety of foods could be included.

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

One of the issues with allergies I see, and why a PSA is so important, is that it is the acts of those who do not have the allergies that affect the allergic. With other illnesses, the actions of those around you do not tend to put you at risk...and thats why I see this as a public health issue, worthy of a PSA.

We to DO NOT ever eat in public, make a mess, slop it around etc. We eat soy and wheat and I do not want to increase the possibility of a contact reaction for anyone with those allergies because of our actions. We eat at home, in the car and always wash before we go into public. And yes, it teaches the kids a "universal respect" for others who are not exactly the same as us. My daughter had a snack while at her dance recital and I wiped up the table before AND after she ate. We also do not use scented products...even if my kids are fine with a certain product...there very well may be someone out there who is not.

I actually contacted treehouse tv, and cbc a while ago about some method of getting the message out there that other kids actions contribute to the danger allergic kids face. I also asked them to reconsider the tv line up that plays just before school that constantly talks about PB (toopi and binoo, berenstein bears, barney etc.). There are a few shows who bring up how wonderful PB is all the time, and playing these before school to kids who attend the increasing number of peanut free schools, and who then can not bring it for lunch, probably "fuels the fire" about the issue and contributes to allergic kids freeling alienated and being treated like a burdern. I suggested Arthur, or a few other allergy aware shows (perhaps create one) in the 7 am to 8:30 am time slots. I have noticed that arthur is now on one of those channels ( i think cbc) just before school, not sure if I had anything to do with that or if it was a coincidence. However, toopi and binoo is on the before school line up on treehouse. It is a new show and it references PB in almost every episode. I don't care if the show is on their channel...I am just concerned that at 7 am to 8:30 am all that happens is "lets get everyone mad at the PA kids".

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Or what about that Barney song?? "Peanut... peeeaaannnnuuutt butter... and jelly!" Aargh!

I hope one day mentioning peanuts and peanut butter on kids' shows will be considered politically incorrect. I mean, decades ago it was OK to give BB guns as a gift and advertise them... not so anymore. Too many kids got injured. Or with the advent of AIDS, it became politically incorrect and irresponsible to depict or suggest unsafe **. BBS guns and condoms may seem unrelated to the issue of allergies.... but it's not the specific subject, it's the raising of awareness and responsible portrayal in the media. I think those TV shows that emphasize how delicious peanut butter is and how everyone eats it are being irresponsible.

I know there's a balance... so I would like to see more examples of peanut butter used in an allergy-aware context. For example, "we eat peanut butter at home but not in public because others are allergic to it"... something along those lines.

Treehouse TV has certain types of messages.... for example, safety at home (Don't drink cleaning products, they're poison.) Something similar could be done with allergies. I'm not saying the message should be don't eat these foods... rather don't eat these foods around other people. Be considerate to those around you who suffer from allergies.

PSAs do not necessarily have to be so out of reach. I used to work for a charitable organization and we had a major advertising company do our PSAs, pro bono. Yes, it took longer to get done, but it did get done.

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

Perhaps we should adopt the song Four Dead In Ohio by Crosby Stills Nash Young, but change the lyrics to fit our agenda.

PSA's for handwashing as a way to prevent the spread of germs could do double duty if they had a statement about food allergies.
Can we get these guys on the band wagon?http://www.safety-council.org/
Are we not talking about safety?
If we can educate our teachers and in Ontario all employees must be trained so they should get it. (check my other long post, obviously they aren't) I would like it taught in the classroom as a way to keep your friends safe. I would like School Council meetings (PTA) to have presentations mid-term as a way to remind the teachers and to get attention of other parents. We could give presentations at camps, sports faciities, banquet halls.
I would like presentations done at Boys and girls clubs as well as the Boy Scouts andf Girl Guides. I would like Boy Scouts and Girl Guides to get badges for learning this.
I see that in Toronto there are presentations regularly given by Anaphylaxis Canada. Great for them but why not train others in other communities. My reatives or friends might attend and learn something.
I would like label laws to change so that fr those who do get it on some basic level. They can decifer what is in food without having to get a degree in chemistry. If they saw what was in the food they might realise why we want it kept at a distance.
We need to approach those corporations in whose best interest it is that we be healthy and active. Major drug companies, makers of EpiPens, Ana-Totes, bread machines, soy milk companies etc. they have a vested interest in keeping us alive to buy their product.
We need to be visible. We need to be out there enjoying life and saying that we can lead normal heathy lives if others would let us. We need to be at health shows, drug company conventions. We need to give talks at hospitality and hotel management schools. We need the city tourism help desks be aware of our needs and be a resouce for visitors.
Just a few thoughts.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Susan,

Those are all excellent suggestions for raising awareness.

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

Susan -

Find a way to pay my yearly salary, and I'll start getting all that stuff done for you.

"If I had a million dollars... (If I had a million dollars...)
I'd make them all aware (Oh how aware they all would be)
If I had a million dollars (If I HAD a million dollars...)
They'd know the word AL-LER-GY (and maybe even anaphylaxis)"

Maybe we need to ask The Bare Naked Ladies to write us an anthem... They did a fundraiser for FAAN last year or the year before. I wonder if they have some kind of allergy connection. I always wondered why they did that for an American allergy association when they are Canadian. Epi-Man and Epi-Man Jr. are big fans of theirs. Maybe we will write them a letter... (in our spare time). (Sigh.)

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

P.S. I meant to post a great quote that I saw the other day, by Elton John. He was speaking about AIDS but it made me think of anaphylaxis:

"We don't have a cure, but we do have a vaccine. It's called education."

Isn't that an awesome statement??

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Karen,

The Barenaked Ladies are great philanthropists. When I worked for that children's rights organization, Steve and Ed showed up at the fundraiser (and they weren't even the guests of honour). It was Ernie Coombs (Mr. Dressup) and they were friends and huge fans of his so they showed up to help the cause.

I know that cancer causes are very near and dear to their heart as their keyboardist Kevin Hearn was diagnosed with leukemia. He's the spokesperson for the Canadian Strategy for Cancer Control.

Karen, I love your new lyrics to "If I Had $1,000,000". Maybe they would sing that for the PSA or on a children's tv channel... Did you know they do the music for that TV show "Seven Little Monsters"?

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome