News that 17-year-old Morgan Crutchfield of Staley, North Carolina died of anaphylaxis on October 5, 2015, hit the food allergy community hard. This community was already reeling from the anaphylaxis deaths in September of Simon Katz, a Colorado high school student, and of Andrea Mariano, a Canadian teenager who suffered an ultimately fatal reaction on her second day at university.
A third death in less than three weeks was almost too much to process. All three who died were young people so full of promise, and right on the cusp of adulthood.
At Allergic Living, we dread having to report on young people’s anaphylaxis tragedies. From the enormity of a vibrant life extinguished to the grieving of immediate family, it’s awful to bear witness. But there’s more than that. We share the food allergy community’s sense that we’ve seen this bad movie over and over and over again.
In studies and in newswriting, the same narrative is being repeated: it is a teen or young adult who dies of anaphylaxis, and that young person died from inadvertently consuming an allergen, and almost invariably didn’t have an epinephrine auto-injector to use, or didn’t use it soon enough.
We’ve got to come together as a community and say: “No more!” – this has to change.
It was only Thanksgiving of 2014 that four young men died of severe food-allergic reactions, and again over a span of about three weeks. Just one of them, Chandler Swink, who was severely allergic to peanuts, injected epinephrine. (But he then drove alone to hospital, and collapsed.)
I don’t mean to suggest food allergy deaths are frequent; fortunately, they are not. But that doesn’t change the fact that every death is a tragedy – since almost all of them could be prevented. So what can we do as a community to get our young people abiding by the allergy precautions of never eating without your auto-injectors and never failing to read a label?
From extensive research by our magazine, I think that reliability is built from a foundation of early training, open lines of communication, and helping allergic teens to feel included and “normal”. We have to truly hear what teens have to say about their feelings, their experiences and their stumbling blocks.
To provide a small example of that, contributor Nicole Smith, who lives just an hour’s drive from Simon Katz’s high school, set up a focus group to hear from allergic teenagers themselves in the wake of tragedy. The discussion she moderated for Allergic Living makes for intriguing reading – you may be surprised by both the strong opinions the students have about reaching teenagers, and by the missteps that even a well-educated group can make. See: Teens Speak Up About Averting Food Allergy Tragedies.
To further explore how parents can reach allergic teens more effectively, we invited Laura Bantock, the regional director of Food Allergy Canada, to speak directly to us as parents. Laura is excellent on the subject of teen communication, as you’ll see in her article How to Talk to Teens About Food Allergies.
Lastly, thinking about the whole topic of teens resonates deeply with me and my fellow editors because, as our subscribers know, the current issue of Allergic Living investigates the subject of “food allergies and the teenage brain.” One of the strong conclusions in that cover article is that peers can play an significant role in helping allergic teens to feel accepted and “normal”. The truth is, there is much work to do to improve communication with teens, and their close friends, about the serious nature of food allergies.
As we all undertake that work, in the back of our minds, we have to remember: “No more!” In the names of those who have gone before their time, let’s strive to end the scourge of preventable anaphylaxis fatalities.