Tragically, there has been another food allergy death. This beautiful, strong, and vibrant man, Andrew Turner, who lived with an allergy to nuts for 35 years, died while enjoying a meal at a friend’s house after eating a crust of bread that contained nuts. Mr. Turner did not receive first aid until paramedics arrived, but it was too late to save him. His mother said her son had been so careful about his allergy that the question of carrying an EpiPen ‘simply never arose‘.
Before the call comes out that “we need more advocacy”, let’s examine the safety messages that lead advocacy groups are sharing, then we’ll see if more advocacy in its present form is really what we need.
FARE’s newsletter sent this week included the article 6 Tips For Celebrating The Holidays. Only at Tip #6 is “medication” mentioned (not epinephrine), and the tip says only: “As always, be sure to ask about ingredients, check labels when possible, and carry medications with you in case of a reaction.” The safety message ends with “carry medications”, which does NOT go far enough.
Anaphylaxis Canada recently shared this page on travelling with allergies, and they state “Should a reaction occur, use the auto-injector at the earliest sign, and then ask the flight attendant for help.” This statement is better, but still not nearly enough.
In response to the tragedy of Andrew Turner’s death, Anaphylaxis UK “warned people to be especially vigilant over Christmas… There are lots of factors that can contribute towards an individual’s sensitivity at any particular time. Surviving a severe reaction can depend on factors such as how soon they receive emergency medication and the first aid treatment following the reaction.”
This will do nothing to protect the next person who experiences an allergic reaction. What does “especially vigilant” mean, and why should we only be especially vigilant over Christmas? They say that the timing of receipt of emergency medication is key, but how soon should it and the first aid treatment they refer to following a reaction be received? What is that first aid treatment, and why do they leave all these unanswered questions? Do they not know, or are they not willing to share this knowledge?
The recent Food Allergy Blogger Conference brought together an incredibly powerful group of committed communicators who can work together to improve the safety message. I urge that wonderful community and every person who reads my blog to become more than an Anaphylaxis Advocate, by becoming an Anaphylaxis Safety Advocate.
Despite the best intentions of our lead anaphylaxis advocacy groups and the physicians who inform us, the message has not been getting through. Week after week, month after month, predictable fatal mistakes are made, which prove that we as newly minted Anaphylaxis Safety Advocates must communicate far more specifically and effectively how to get through an allergic reaction safely. We must not accept the 1,500 deaths worldwide to anaphylaxis, when studies show that at least 90% of the fatalities are preventable with proper first aid.
The first step to take is to inform yourself. My observation is that most people think they know what to do, but they’re actually very confused. That’s understandable, because the messages shared to date has been confusing. They’ve been told to use epinephrine only for a “severe reaction”, but they worry when they read of tragedies again and again during which everything was done “by the book”, like the tragic loss of Natalie Giorgi this past summer.
The book is wrong, my friends. Anaphylaxis will be diagnosed in retrospect after discussion with your doctor, it likely won’t be crystal clear at the emergency scene when first aid care should be given. You must provide epinephrine at the scene within a very short window to stop the reaction from progressing to anaphylaxis, and waiting until anaphylaxis is obvious could be a death sentence.
Are you going to take a chance and hope you really know every symptom to watch for, exactly when to use epinephrine during the course of a reaction, and what steps to take next to preserve life? Or are you going to take an anaphylaxis first aid course to be sure?
If you were at FABlogCon and would like to take the online anaphylaxis first aid course I wrote with Allergist Dr. Mark Greenwald, please send a message and I will give you a free course. It follows the extremely relevant WAO Guidelines for the Assessment and Management of Anaphylaxis, the product of 84 regional and national allergy and clinical immunology societies. If you can find another course focusing exclusively on the first aid care to be provided at the scene of an allergic emergency, then by all means take it. Unfortunately, all you will find are inadequate PowerPoint presentations with or without voice over focusing mainly on kids in schools with food allergies, which fall far short of the safety message you need and deserve to have.
The online course on exactly how to react during an allergic emergency is at EpiPenTraining.com. The course costs only $17.97 with Activation Code EPICENTER. If you were at FABlogCon and would like to become an Anaphylaxis Safety Advocate, please send a request for a free course code to firstname.lastname@example.org.
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