Food Allergy Awareness Week is a great time to take stock. We have come so far in the last decade on food allergy awareness.
It’s now common for schools to make food allergy accommodations to protect at-risk kids, while colleges in the United States are also moving in that direction (following a key ADA decision), and summer camps are starting to go allergy- and even gluten-friendly.
As one who gets feedback daily from Allergic Living readers, I hear more and more stories of inclusiveness and educators who “get it” when it comes to food allergies. This definitely is big progress compared to years gone by.
However, I must confess to feeling more concerned and reflective than usual this 2013 Awareness Week (May 12-18). If you’re reading this, you likely know why. We’ve lost four young people this spring to the swift and over-powering allergic reaction that is anaphylaxis.
Most recently, 11-year-old Tanner Henstra succumbed to a severe reaction on April 19 following a food accident in which he bit into a pretzel at a friend’s house that turned out to be filled with peanut butter. Eight-year-old Adrian Gutierrez, died two weeks earlier, having mistakenly sipped from his brother’s hot chocolate at a Starbuck’s shop. The boy with the wide grin and luminous brown eyes had been allergic to both dairy and peanuts.
Spring Break in March saw two tragedies: 12-year-old Maia Santarelli-Gallo passed away following symptoms suspected to be anaphylaxis – the incident occurred after she’d eaten an ice cream cone. The girl’s family had only ever been told she was dairy and egg intolerant. There was no epinephrine auto-injector; they had no idea she needed one.
Cameron Groezinger-Fitzpatrick’s mother said he had just arrived home from university for Spring Break in early March when he ate a cookie a friend offered. It was supposed to be peanut-free but turned out to contain peanut butter. Again, he didn’t get epinephrine, and succumbed quickly to the reaction.
This Sunday was Mother’s Day, and that’s four mothers – from Utah, New Jersey, Massachusetts and Ontario, Canada – who spent a sad day, mourning children who passed away long before their time.
Anaphylaxis is a scourge, but to fight it, we need better education among the general public, educators, airlines, restaurants – and even among those who live with food allergy and its risks every day. There are lessons from these deaths that go beyond the basic shock of tragedy.
Consider that the two younger boys both got epinephrine, but they got it late. The other two did not receive the life-saving shot at all. If there’s one thing we can all strive to do this Awareness Week, it’s to get the message out that: in anaphylaxis, seconds count and epinephrine – not antihistamines, not an asthma puffer – is the first-line medication and the allergic person’s lifesaver. Use it.
Epinephrine is considered an extremely safe drug, but in anaphylaxis, it works best when given promptly. The guidelines issued by the National Institute of Allergy and Infectious Diseases are very clear on this point: “If you are experiencing anaphylaxis, or even suspect that you are, immediately take epinephrine and seek immediate medical attention by calling 9-1-1. Delaying epinephrine use places you at significantly increased risk for a life-threatening reaction.”
Tanner Henstra’s mother Stacie learned these facts the worst way possible. Even as a nurse by profession, she told the local Utah newspaper, “I was shocked at the severity of his reaction. It was just so fast.”
Adri Gutierrez’s family’s has set up a Facebook page to keep the young man’s spirit and memory alive. His aunt is direct in a recent post to the food allergy community: “He didn’t get a life-saving epinephrine shot until it was too late…. Complacency and unpreparedness killed Adri. Don’t let this happen to your loved one.”
Time and time again at this magazine, we hear of a parent or a teacher or a caregiver who wanted to “wait and see if a reaction gets worse” before administering the auto-injector. This Awareness Week, let’s spread the word: Waiting is a bad idea. If you’re seeing the symptoms of anaphylaxis, give the epinephrine, and give it now.
To help with the education process, Allergic Living has created a new poster – Six That Save Lives. I encourage you to print it and share it with the school, the doctor’s office, anyone you think will benefit from it.
Let’s do our best to make the rest of 2013 a safe and inclusiveness time for all the kids and all the grown-ups who live with food allergies. If we keep up the education, watch that our young people don’t get complacent about food allergies, carry epinephrine and are calmly prepared to use it – we can prevent the needless loss of precious lives.