Wednesday, January 23, 2013

What's In a Name?

Within any community, a change in leadership is unsettling.  Mergers are particularly nerve wracking because combining two similar entities requires compromise.  Each party involved - from the upper levels of management down to each individual employed or served by an organization - has a desire to maintain certain aspects from the previous organizations.  Different people have different priorities, and inevitably someone will not get what they want.  The allergy community is currently undergoing one of these transitions.

The Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) formed to cause a new organization called Food Allergy Research & Education (FARE) in 2012.  You can read the press release and FAQ regarding the merger for yourself.  Multiple issues are addressed in these articles, including the reason that "anaphylaxis" was not included in the new name.  To paraphrase FARE on this matter, it is important for people to recognize and appropriately address food allergies before anaphylaxis occurs.  A small, but vocal, contingency within the food allergy community has taken exception to the omission of the word anaphylaxis in FARE's name.  A petition has been started demanding that the organization's name be altered to Food Allergy and Anaphylaxis Research and Education (FAARE) to more appropriately represent the anaphylactic community.  

I disagree with the assertion that excluding the word anaphylaxis from the new name hurts anyone in the allergy community.  I have multiple food allergies, as do my husband and both of our children.  Three of us have experienced anaphylaxis related to one or more allergens.  All four of us have less severe food allergies that, thus far, have not led to anaphylaxis.  The assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy.  Ask anyone who "only" gets hives or profuse vomiting caused by food allergens whether their allergy is "no big deal" just because the their airway is not cut off.  Even those food allergies that are milder and responsive to antihistamines (rather than requiring epinephrine) can have a serious impact on someone's livelihood.  When is the last time you managed to remain productive despite severe vomiting or diarrhea or a "simple" case of hives that required sedating antihistamines?  Increased awareness of food allergies means realizing that there can be a variety of symptoms up to and including anaphylaxis.  

My position is that FAAN and FAI leadership made the right decision when they chose to omit "anaphylaxis" from the name of the new organization.  Further, I believe that those who are creating such a fuss over the name are taking resources away from FARE's stated mission.

16 comments:

  1. Kendra,
    What is going on is beyond the scope of what you probably are aware of right now. If you have questions feel free to contact Team Anaphylaxis for details.
    Thank you,
    Jodie
    Team Anaphylaxis Founder

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  2. If you want people to sign your petition, Jodie, then that information should be posted publicly so people can make an informed decision. Please share it here so my readers can also benefit from the details.

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  3. Thank you Kendra for the reply-
    We have the signatures we need from people who are informed and have made a decision. Have you read the press release? If you have blog followers they are welcome to read information on the Team Anaphylaxis Facebook page to stay informed.

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  4. Yes, I have read the press release. I have read everything that several of your followers have posted. I still disagree for the same reasons that I listed in my blog post. I have to say that I am rather put off by the insinuation that anyone who disagrees with you is uninformed.

    You, Jodie, as with some of your followers, seem to be of the impression that everyone in the allergy community would agree with you if only they would read what you have to say. Fact is that not every one of us in the allergy, or even anaphylactic allergy, community does agree. Disagreeing with your opinion does not make me ill informed. It simply means that I do not agree with you.

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  6. Several things came to mind in reading your post.
    1) Anaphylaxis can occur without "affecting one's airway." It is a common misunderstanding to think that anaphylaxis ONLY occurs when one's airway is affected - which is why people often make mistakes in recognizing the symptoms. Anaphylaxis occurs when 2 or more body systems are affected (skin, respiratory, circulatory, gastroenterology). The fact that people still do not understand/retain this crucial information is proof why anaphylaxis still needs to be a part of the name.
    2) Anaphylaxis is a part of the reality of living with food alleriges and should be INCLUDED - not deleted. As you wrote yourself "Increased awareness of food allergies means realizing that there can be a variety of symptoms up to and including anaphylaxis." Exactly our point. Include it. Food allergies and anaphylaxis are not "one or the other." And neither should the name of an organization that commits itself to the education and potential cures of food allergies be "one or the other" - it should be both.
    3)Your statement of "the assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy" peaked my attention. There are many important things to know about food allergies - but I am curious to learn your reasoning for what is more important than learning/educating how to prevent a preventable severe/fatal reaction? I'm fairly certain that parents who have lost a child to a food allergic reaction would disagree with your statement and say anaphylaxis is the most important thing to understand about food allergies - it's a matter of life and death. What's more "important" than that?
    4) Those who are asking for it to be reinstated in the name are not saying it is the ONLY thing that FARE should focus on - we are just questioning why an important part of life/reality with food allergies was chosen to be dropped from the name. It's almost as if "anaphylaxis" became a "dirty word" and was censored. It's a part of the whole picture - a piece of the puzzle.
    Not trying to pick a battle - just sharing points that hopefully will make people stop and think

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    1. I agree on your first point, Allison M. Anaphylaxis does not always include breathing difficulties. I was giving a single example. I am very familiar with anaphylaxis and have worked to educate patients, parents, schools and even physicians who were not as familiar with food allergies - up to and including anaphylaxis - as they needed to be in a certain situation. Most commonly, those situations are when another allergy mom is asking me for ideas and I am encouraging her to activate her child's action plan or call her doctor immediately. The most concerning times have been when emergency room staff have not recognized the serious nature of an allergic reaction that has not progressed to shock. It is not a lack of understanding about anaphylaxis specifically. It is a lack of understanding about allergies. One cannot understand anaphylaxis if they do not understand that allergies exist on a continuum.

      To your second point... I never said that reference to anaphylaxis should be deleted from FARE's educational materials. I believe quite strongly that it should be references in materials to some degree. What degree should, in my opinion, based on the materials. With regard to discussion of Food Allergy Action Plans, I would certainly hope that anaphylaxis, and the potential for any allergic reaction to progress to anaphylaxis, would be highlighted. Removing the word anaphylaxis from the name DOES NOT CHANGE the group's mission.

      3 - Anaphylaxis does not occur in a vacuum. While roughly 1/3 of anaphylactic reactions occur in patients with no previously known food allergies, the other 2/3 of anaphylactic reactions occur in patients WITH previously known food allergies. For those patients with previously known food allergies, knowing about anaphylaxis is not the most important message. Education about managing food allergies day to day is what will minimize the chances of anaphylaxis occurring. Absolutely, those patients should understand anaphylaxis. But understanding how to recognize anaphylaxis is for naught if patients (and caregivers) are incapable of preventing it.

      Going back to the 1/3 of patients experience anaphylaxis in the absence of known food allergies... I see children every day with very clear signs of allergy. I see children who develop rashes around their mouth very frequently after they eat. Yet the parents do not recognize this as a sign of allergy. Primary care doctors are either unaware that this is occurring, or they may dismiss it as nothing to worry about because it doesn't seem serious. How many of these patients are among the 1/3 of those experiencing anaphylaxis in the absence of known food allergens? How many of those would have been able to avoid anaphylaxis if they had received the food allergy diagnosis when it was "just" a rash?

      4 - You say that you are questioning why FARE did not include "anaphylaxis" in its new name. That question was answered when they announced the merger and new name. My assertion is that you are not questioning them about why it was done. Rather, you are attempting to sway their opinion by taking the message that did not sway them in the process of considering a new name and yelling it louder in an attempt to make them hear you. what you don't seem to understand is that FARE does hear you. FARE heard you and disagreed, as do I.

      I see the continued pressing of this issue much as I see a child continuing to ask for a cookie that mom and dad have already said they cannot have. If the child asks enough times, cries and pitches a loud enough fit, then some parents might give in. Many parents, however, do not.

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  7. Mrs. Mello posted and deleted it very quickly. I would like to respond to her question, so I am reposting it below.

    "What's in a name? You tell me. Did you take your husband's name or keep yours when you married? Why? Because the NAME does matter."

    I chose to take my husband's name rather than keep my own. Why? Because it is not my name that says who I am. It is my character - my words and my actions.

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  8. E.Andert Team Anaphylaxis MemberJanuary 27, 2013 at 9:35 AM

    This isn't about children asking their parents for cookies and parents giving in or not giving in. This is about an allergy community who feels let down by cooperation that they believed in. So many families give to this organization and in return are not getting the help they are seeking. Then to take the word ANAPHYLAXIS out of the name only makes it worse. These parents are dealing with people, and schools that think everything is OK it's only hives and a stomach ache. Taking the "WORD" out makes people think it's less important then before. Yes the word FARE stands for Food Allergy Research & Education but it's hard to educate someone on anaphylaxis if even the organization that is supposed to be teaching it does not support it. I don't think anyone is or was demanding that they change the wording, they were merely asking for reconsideration with examples to why from the allergy community who deals with this daily such as you. That's the wonderful thing about debates is we can agree to disagree. So now I will disagree with this statement from you.” The assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy." I'm interested to know what's more important then teaching a person about anaphylaxis when it comes to their allergies? If they are not informed about it how are they to take it serious? It will go back to the "oh it's just hives and a stomach ache again. I personally deal with this all the time from many families looking for help. This is just like any other emergency situation in that you need to be prepared for the worst-case scenario, and without the word that's not preparing them for the worst case. Yes we want to prevent anaphylaxis from happening, that's a given but that doesn't mean it isn't going to happen so they need to be prepared and educated on it. FARE has made their decision and people can now choose to stick with the organization or choose to switch to another organization who will help and listen to what they are asking for being that the money they pay into it is supposed to help the cause.

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  9. "This isn't about children asking their parents for cookies and parents giving in or not giving in. This is about an allergy community who feels let down by cooperation that they believed in."

    Once again... Team Anaphylaxis is but a small part of the allergy community. As of this moment, you have 764 likes on your Facebook page and 663 signatures on your petition. Among those allergy groups in which I am active on Facebook, there are several thousand even when you account for overlap between groups. Those who take part in allergy support groups are, themselves, a minority in the allergy community because once people have gotten their feet under them after diagnosis is made then there is not typically a need for them to continue seeking support from the greater allergy community. Yet Team Anaphylaxis presumes to speak for the rest of us.

    You say that "[You] don't think anyone is or was demanding that they change the wording, they were merely asking for reconsideration with examples to why from the allergy community who deals with this daily such as you. That's the wonderful thing about debates is we can agree to disagree. So now I will disagree with this statement from you.” Yet your petition states "FARE (the newly merged FAAN and FAI) organization.: Put the word ANAPHYLAXIS back into your "branded" name."

    You say that we can agree to disagree, yet you (Team Anaphylaxis as a group) continue to post comments here when I have placed but one post on the Team Anaphylaxis page indicating my disagreement. Do you intend to continue arguing loudly here until I agree to make my blog space say when you think it should say?

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  10. okay, i agree with kendra in this. before having children...i always thought that an allergic reaction was one that happened if you had an anaphylactic (spelling botched im sure) reaction. i was so misinformed because so much emphasis was on this very life threatening reaction! so when my son was born....and i attempted to feed him and he repeatedly vomited and had MAJOR loss of fluid through both ends and we ended up needing iv fluids from the ER the LAST thing i thought that the doctors, allergists and what nots would tell me was he's allergic. i think that there are a lot of people who are misinformed because of the word anaphylactic. it should be allergies in general and not be one particular reaction! otherwise...it would be one hell of a long name to include in it EVERY REACTION TYPE TO ALLERGIES......

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  11. and when it comes to informing parents about allergies, i wish i had known before my son that his vomiting and diarrhea spells were just as deadly then an anaphylactic reaction and yet both reactions are from an allergy, they are just two different types of allergies. so in teaching parents about allergies, one can't claim only anaphylactic reactions are deadly and deserve attention. both reactions are just as deadly and deserve as much as attention as the other.

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  12. Educating those in and out of the allergy community about anaphylaxis is certainly important. I do not, however, believe doing so requires the term's inclusion within an acronym. FARE (and before it FAAN and FAI) educated, advocated and funded research on so many different sub-topics under the food allergy umbrella without including those terms in its name.

    It is important, as an example, to educate the populous that milk allergies are not the same as lactose intolerance, but we're not going to pursue that by asking for some related term to be included in the name. It is important to educate that emergency medications are not the first answer in allergy management but the worst case scenario - that prevention is first and foremost the proper approach. It's important to educate on cross contamination risks. There are many important cogs in the machine and like anaphylaxis, they are part of a whole - not the singular or primary focus.

    It is important to educate that reactions beyond anaphylactic shock are still scary and are still serious. Inclusion of one category of allergic response into a name thereby elevates the importance of that category over others. It's wrong to do so.

    As a parent of a child whose anaphlactic reaction did not cross into shock, I do, very clearly, understand the need to educate others on the scope of the term, as well as all other aspects of food allergies. I do not, however, think inclusion in a name is required to make that happen.

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  13. Who cares if anaphylaxis is in the name. Allergy is more inclusive to people who have life threatening allergies that don't cause anaphylaxis. Both FAAN and FAI are big supporters of non anaphylactic food allergies so they are being inclusive when they use the word allergy. The word education is to educate people about the different types of food allergies. My daughter has FPIES and that is a very serious life threatening reaction to food that is not anaphylactic. In support of all allergies the name they picked includes everyone.... that's my 2 cents worth.

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  14. Try dealing with the school that disregards your childs food issues because it doesn't cause anaphylaxis.

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  15. @ Allison M

    For ease of replying, I am going to use your numbers in my replies.

    2- I agree with your point of “Food allergies and anaphylaxis are not ‘one or the other.’” And it is exactly that point that initially caused me to wonder why Team Ana was causing such a big stink. In my opinion, the new name is more inclusionary. The word “anaphylaxis” has the potential of excluding families who have not experienced an anaphylactic reaction, but the words “food allergies” do not exclude those who experience anaphylaxis. I don’t feel that the new name hinders educating people about allergies or anaphylaxis.

    3- In point 1, you made it a point to hone in on Kendra’s airway restriction point, and imply that it perpetuates a misunderstanding about anaphylaxis. If that is true, I do not find your “life or death” statement in point 3 to be any less harmful. You can be painstaking in your wording if you want to educate people, but then you cannot turn around and use hype and hysterics to try and make a point when it suits you. Certainly anaphylactic reactions are not always fatal.

    4- No, you are not “just questioning.” Team Ana was DEMANDING that the word anaphylaxis be added back into the name. I have seen propaganda that basically suggests that if we care about your children, our children, who suffer from anaphylactic reactions, we will go sign the petition. That is untrue and unfair. It just is not a big deal. I am sick to death of this victim mentality that is so prominent in the food allergy community. Moms playing the victim, teaching their kids to play the victim…. Yeah, your kid has food allergies. YES- it SUCKS. But this hysterical mother routine is getting really old, and only serves to make our entire community look bad. I know people who have kids with food allergies that steer completely clear of our support groups because they think the moms are a bunch of crazies. And times like this… I have to agree with them. Suggesting that anaphylaxis is being dropped because they think it’s a dirty word doesn’t make any sense at all. What does make sense is a bunch of moms jumping on a chance to raise a stink about anything that will get their case heard. The most effective way to advocate for your kid is calmly, firmly, and positively. Every time. But that's a whole separate rant.

    Signed,
    Mom of 3 allergic kids (with anaphylaxis) that you don't know anyway.

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