In tragedy, there are stories to be told and lessons to be learned.
Nashville allergist and immunologist Stacy Dorris, MD, an assistant professor of pediatrics at Vanderbilt University, wants to share the personal stories of people who lost their lives due to a severe food-allergic reaction, or anaphylaxis.
She is developing an online registry of food allergy deaths across the United States to raise awareness and educate people – especially those newly diagnosed – how and why fatal reactions occur.
“I have patients who have food allergies and when I look at their faces after I give them the diagnosis, I’m sure they’re thinking, ‘How do I prevent this?’” she says. “I realized no one was tracking the data in terms of telling stories and identifying if there is a pattern in those stories.”
It’s a personal mission for Dr. Dorris, too. She has a daughter who is allergic to peanuts.
The registry is far from complete, but it’s already “very eye-opening as to how spontaneous and tragic food allergy deaths are,” she says.
Available at NationalFoodAllergyDeathRegistry.org, the registry features a map and index. Each listing in the registry includes basic information, such as the person’s age, location, and the food allergen that caused the reaction.
With consent from families, Dr. Dorris shares more details of the incident: How much of the food allergen was consumed? Was an epinephrine auto-injector administered on the scene? Did EMS respond quickly enough?
“Honing in on these details is important,” Dr. Dorris says. “I want to support the data with clinical facts. The more information we have, the better we’ll be able to understand why food allergy deaths occur and how to prevent them in the future.”
The earliest case currently listed in the registry dates back to 1986. She suspects there were plenty more cases before then, but she believes food allergies were under-diagnosed at that time.
“I would love for the registry to go back as far as I can carry it – with whatever historical data I can dig up and the stories families share with me,” Dr. Dorris says.
If you have a loved one who has passed away due to a food allergy, you can share it with Dr. Dorris at NationalFoodAllergyDeathRegistry.org/contact-us. “We never judge how a person has lost their life,” she writes on the website. “Our only concern is ensuring that your loved one’s full story is showcased on this site.”