What’s in a Name?

“What’s in a name? That which we call a rose
By any other name would smell as sweet.”   Romeo & Juliet; William Shakespeare.

Food allergies. It sounds so benign. It sounds like it should be a minor irritant, a slight inconvenience  Not a severe- serious- life threatening- THIS could KILL my child– diagnosis. But that is exactly what it is.

I often wonder if that is part of the problem with getting non-food allergy- people to understand how hard a diagnosis of food allergies can be. Why we cry when we learn our children are allergic to eggs, or dairy, or peanuts. That our requests for food free celebrations, and nut free schools, and our reluctance to attend birthday parties or restaurants all stem from our desire to protect our children, to prevent them having an anaphylactic reaction. Because for some reason, even when we say  “It’s a life threatening peanut allergy”- or dairy allergy etc;  people just have a hard time grasping what that MEANS! I am sure many people hear “Food Allergy” and think of something more like a “cat allergy” – if we just take some Benadryl or Sudafed we will be fine; at worse suffer a runny nose and itchy watery eyes.  We need only read through the comments section of any allergy article written to see how callous, insensitive and cruel some people can be about making any accommodations for those with allergies.

There has been a stirring in the food allergy community. Conversations among food allergy bloggers, and we are all thinking- there is something about what we CALL food allergies- something almost weak in the name of something that can kill so quickly! What if we made a change?  What if it became referred to by us, by educators, by doctors as something more accurate:  “Allergy-Induced Anaphylaxis” or  “Auto-Immune Anaphylaxis”  A name that drives home the fact that this is a DISEASE. This is not some “lifestyle choice” made simply to ban peanut butter, cookies, and cupcakes. This is not some diet fad, [The Doctors horrible “Fake a Butter Allergy Advice”?]  These foods can KILL my child; and if it was YOUR child who had the allergy, I would do everything I could to protect them. If that meant I couldn’t feed my child a peanut butter sandwich for lunches, I certainly would not complain about the inconvenience; and more so- I would not want to be the one responsible for a child’s anaphylactic reaction or death! I would want my child to have empathy and concern, to WANT to find something else to eat to help keep their friend safe.

A friend, Leti Oliver,  said this:  “If I had never seen Christopher stop breathing, turn pale, then a light shade of pale blue, almost grey and witnessed his whole body spew spit, vomit, and liquid from his eyes, nose, mouth …If I had never witnessed the power of epinephrine bring my baby back to somewhat normal so quickly…I wouldn’t care. If I had never been treated so horribly back in 2003 by local medical professionals because they hadn’t had any experience with such a young baby experiencing anaphylaxis then I wouldn’t feel so strongly. I know our situation, my son’s health is not typical, we are not the “average allergic family” as many doctors and specialist have labeled us…but what has helped is being able to reference “Food Allergy and Anaphylaxis Network” when speaking with the adults that I need to trust to care for CDO [Christopher]. I had been looking to avoid this whole name change thing… but as I was reading up on things and CDO was over my shoulder as he usually does when I’m on line…I saw his face turn to major concern and he said “They took away the word that explains to people that it’s not just like an intolerance thing, the word that tells people i will die! Why would they do that? They can just add an extra A to the abbreviation! We need the name to say not just allergy not just food but anaphylaxis.” that from my 9 year old…and that is why I signed the petition and posted it on Team CDO…not one day goes by that anaphylaxis isn’t up front and center in our days. Thank you for your support, your support of reading how we (CDO and I) feel…He asked if I could find out why only one “A”? Maybe they know something we don’t.”

To this point, there is a petition asking FARE- the newly merged FAAN [Food Allergy and Anaphylaxis Network] and FAI [Food Allergy Initiative] to reconsider their “new” name- to make it FAARE- “Food Allergy & Anaphylaxis Research and Education” [ You may sign it HERE ].

So “What is in a name”? Do you think a change is in order? Personally, I think it would help get across the point that food allergies lead to reactions that can be fatal.

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10 Responses to What’s in a Name?

  1. Kristin Beltaos January 22, 2013 at 1:18 am #

    I agree! Creating more awareness about food allergies is including that “dirty” word ~ anaphylaxis. Leaving it out softens the strife and anxiety families with food allergies deal with on a daily basis. Let’s call a spade a spade…while anaphylaxis is scary, it’s also a fact of our everyday lives. Let’s own it, because we live it!

    • Multiple Food Allergy Help January 24, 2013 at 12:48 pm #

      YES! Exactly Kristin! Thank you!-J

  2. Vivian Stock-Hendel January 23, 2013 at 2:57 am #

    Great post. I agree. I signed and shared.

    • Multiple Food Allergy Help January 23, 2013 at 11:30 pm #

      Thank you Vivian! ~Jenny

  3. Yael January 24, 2013 at 6:04 am #

    “We love this non-profit organization and have come so far. We are afraid without this word they will not be able to help us raise awareness, funds and get the research we need to get us closer to a cure. Every year the Gov has been slashing fund for medical research if they don’t use the right word we go back to the bottom of the barrel for diseases. Kids are dying because of misunderstanding and many are still tip toeing thru this word and properly advocating for their kids. The word “anaphylaxis” is the only free way we have for advocating for our kids and keep them alive! An “allergy” describes so many reactions from a food or substance but people assume it’s a rash or inconvenience. “Anaphylaxis” is the word we use when we step out of our safe homes in a world where every day our families dodge bullets -foods that can simply take our kids lives away. We use it to get #504’s which is the Federal Disability Protection Plan, medication in our schools, prescriptions in our hands, understanding by our and our children’s peers, the ability to travel-all in a juggle between life and death. I want the word anaphylaxis to go away too but not until MY child has a “cure”. “FARE wants to raise funds and be noticed-the word anaphylaxis is their biggest tool-I need for them to put it back in and support those that need it most and have supported them.”

    • Multiple Food Allergy Help January 24, 2013 at 12:36 pm #

      Yael, I could not agree more with you! I am not trying to bash FARE, I love both parent organizations and am fully aware how much they have done to help bring awareness to food allergies! I think our disease in general needs a new name! When anyone hears “Cancer” they immediately shiver- because cancer can mean death, and they all know someone who has died from it. Thank you so much for your passionate reply! -Jenny

  4. Gratefulfoodie January 24, 2013 at 6:31 am #

    I had truly thought the new name was okay, not thrilling or cutting edge and then I never give it too much more thought. I always have used the term life threatening food allergies myself. When people starting pointing out the need for the term Anaphylaxis the bells went off! You are right! Even though I am saying life threatening, other use the term anaphylaxis and that is exactly what it is!

    It’s scary, it is real and it is the truth! I do hope FARE takes this energy and runs with it! Take all that fabulous passion and update the name or add a tag line explaining things.

    I love your statement of let’s own it! You are so right! Let’s own it.

    • Multiple Food Allergy Help January 24, 2013 at 12:39 pm #

      Thank you Caroline! Yes, Kristin and Yael both make powerful points in support of this post! I am very happy you liked this post! Thank you! -J

  5. AllergyMentor January 24, 2013 at 5:30 pm #

    I love the way you have explained this. I, too, had not given the new name much thought. It lacks sizzle and passion, but it passed. Your blog helps me feel more invested in the name of the organization. I think families with food allergies face an extra challenge in that food allergy DOES vary in intensity. It can be a mild reaction similar to that someone with a cat allergy would suffer. Or it can be like greeting a lion in Lady Gaga’s raw meat dress. The new name fails to address the more severe end of the spectrum, the side those of us who live with life threatening food allergies need to public to be more aware of… thank you for reframing this subject in a way that highlights the real issue at hand.

  6. Maya February 2, 2013 at 4:18 am #

    Yes, I agree, too…the more dire the possible consequence, the name should relay that.

    People who aren’t educated or around people with anaphylaxis to foods think allergy and the person will simply sneeze or get a stomach ache. They have no idea of the scope which anaphylaxis entails.

    The only one that ‘may’ get more of a serious response is peanut allergy, but what about people who deal with severe other allergies to proteins, like milk, eggs, soy or whatnot? There has to be more awareness for anaphylaxis happening for many foods, not just the peanut.

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