“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.