Food should not kill, but in the last three weeks alone, the food allergy community has grappled with three food-induced anaphylaxis deaths. All were young adults in the prime of their lives; one in middle school, another going to a school dance, and one just engaged to the love of her life.
No one is perfect in how they conduct themselves daily, but for those with food allergies, falling short of the mark of perfection even once can lead to tragic consequences. A forgotten auto-injector, a bite of the wrong food (even if you spit it out immediately), using a spoon to stir your drink that has been contaminated with your allergen, or being served the wrong school meal can lead to lethal consequences. These are just some of the real scenarios attributed to fatalities in the last month alone. It is terrifying how little can go wrong for a death to occur.
To comfort us, many well-intentioned medical professionals, journalists, and laypeople alike cite statistics demonstrating that fatal reactions are very rare. We are often told that a fatality from a car accident or being struck by lightning is more likely to occur than a fatal food allergy reaction. On its face, there is comfort in these low numbers, but there is also an important catch that may not be obvious.
Our food allergy community deeply feels each fatality from food-related anaphylaxis personally because we can easily paint the picture of ourselves or our child making the same type of mistake. It takes one moment in time to leave an auto-injector in the car, at the gym, on the tennis court, or at a friend’s house. We have all had near misses. Personally, I remind my son constantly about making sure he has his auto-injectors on him, and yet I have made the drive to pick up the auto-injector left behind more than once.
Dr. Nana Mireku, a pediatric allergist and food allergy parent, sums up what many in the community feel. She says, “My heart has been so heavy hearing these stories.” She says bluntly what many of us feel so acutely – it is truly difficult not to internalize these stories when looking at your own children who have food allergies. Mireku speaks to my heart when she says, “These stories are not fear tactics. They are real families.” She says, “As a community, my allergist colleagues, pediatricians, parents, friends, families, we can make change and impact by raising awareness about food allergies and the importance of having lifesaving medications (epinephrine) at all times.”
Food is all around us. Most teens will likely attend a high school dance or sporting event involving food. Many of life’s celebrations and milestones are replete with food. Even the most diligent teenager trained on what not to eat can make one fatal mistake. This is what haunts us because it’s real, and it can happen so easily.
Parents of food-allergic kids and adults with food allergies are often subject to hostility and scorn when asking for reasonable and legal accommodations. This occurs in our schools, on the playground, in the workplace, and when we travel on airlines. Too many people do not believe a food allergy is a real condition. Adding fuel to the fire, the mainstream media and the television/movie industry continue to use food allergies as a punchline in their jokes, with no apologies forthcoming anytime soon. It concerns me when kids and adults are embarrassed because of their food allergies. One day, someone with a food allergy may not inform those around them about their allergy and the location of their medication or just be silent about progressing anaphylaxis symptoms. People are wrongly asked to leave an airplane when disclosing a food allergy. All this contributes to both children and adults with food allergies facing bullying and the ensuing embarrassment factor.
Having your throat close and sensing your life being threatened during anaphylaxis is not humorous. Please be kind to someone asking for food allergy accommodations even if they “look normal.” There have been three funerals in the last three weeks. Each scenario is relatable to any one of us who lives with this very real disease. This is what is so frightening – it could happen to any of us because no one is perfect. To err is human, and we are all human.
Lianne Mandelbaum is founder, the No Nut Traveler, and can be reached on Twitter @nonuttraveler.