From the Allergic Living Archives. First published in the magazine in 2008.
As a magazine writer, Chris Koentges eats, drinks and travels for a living. The 31-year-old Calgary resident has what most people would consider a dream assignment: he samples delicious foods in fabulous resorts and exotic locales. Then he finds the right words to describe to his readers what he eats and what he sees.
There’s just one problem in paradise: Koentges is allergic to tree nuts . While he’ll sometimes let restaurants know that he can’t have nuts in meals he orders, mistakes happen about once or twice a year.
“I think, ‘Oh crap’,” he says of recognizing the flavor of nuts. He knows the next hour or two will be filled with intense stomach pain, hives and swelling.
His strategy? To wait it out. Cautious parents of food allergic children will be stunned to learn that Koentges does not own or carry an epinephrine auto-injector. He admits that if a food looks particularly intriguing and tasty, he’ll take a chance and try it. “It’s a pretty stupid approach to it, I am a stupid person,” says Koentges. “I’m kind of cavalier about things.”
In fact, he’s savvy, talented – and in good company. There are large numbers of adults with potentially life-threatening food allergies who do not carry auto-injectors, are not vigilant food label readers and are unlikely to be found wearing MedicAlert jewelry. Almost everyone knows someone – a colleague, a friend – who has been diagnosed with a food allergy but believes that he or she doesn’t need to carry an auto-injector because the allergy is “mild” or “moderate”.
These people lack the understanding of the disease to appreciate that symptoms are not consistent; that a mild reaction today could mean full-on anaphylaxis the next time (complete with problems breathing and a dangerous drop in blood pressure). So they go about their lives taking few precautions for the condition, blithely ignoring or dismissing the fact that they are standing on the precipice of a few mistaken bites or a sting, and unprepared if a big reaction does arise.
Surveys reveal that adults with food and stinging insect allergies are far more likely to take risks than parents would take with an allergic child. “We don’t see this behavior from parent to child. It seems to be an adult phenomenon,” said Anne Muñoz-Furlong, the former CEO of the Food Allergy & Anaphylaxis Network (FAAN, now FARE ), who has been involved in allergy research. “We often say that teenagers are risk-takers, and they feel like they’re invincible. But I hear more stories of risk-taking from adults than I do from teens.”
New studies on adults with food allergies are telling. The qualitative research firm Fresh Squeezed Ideas Inc. examined patient attitudes about anaphylaxis for the company that markets the EpiPen auto-injector in Canada. Fresh Squeezed surveyed 650 participants, dividing them into two main groups – those a physician had diagnosed as food or sting allergic and those who were labeled “at risk”. The latter group had experienced symptoms clearly consistent with such an allergy, but had not been formally been diagnosed.
In the “at risk” group, only 4 per cent owned and carried an auto-injector, compared to about half of the diagnosed group. As well, 65 per cent of those “at risk” believed an antihistamine would always clear up allergy symptoms.
In FAAN’s 2004 survey of seafood allergy prevalence, auto-injector findings mirrored that “at risk” group. Only 8.6 per cent of those with a seafood allergy, which affects over six million Americans and is largely an adult affliction, had an auto-injector.
Fresh Squeezed Ideas’ research revealed a shortlist of the reasons for not carrying an auto-injector:
- Most of the “at risk” group thought only people with “severe” allergies required one, and distanced themselves from that label;
- A significant majority (in both diagnosed and at risk groups) also believed strongly in their ability to avoid allergens.
- A lot counted on their family physician’s advice and if the doctor hadn’t mention a prescription for an auto-injector, the patient didn’t ask whether one was needed.
- Several also expressed confidence that there was good awareness about food allergies in society in general and at restaurants – and drew the assumption that this was adequate protection.
“This is like the community that lives on the edge of the dormant volcano,” says John McGarr, managing director of Fresh Squeezed Ideas, of the adults at risk of anaphylaxis who don’t take precautions. “They know the thing can erupt, but yet they continue to live there.”
Koentges would fall into McGarr’s sub category of “diagnosed who don’t carry an auto-injector,” but back when he was a 5-year-old with a nut allergy that had just been confirmed, one was prescribed. “When I was young I did have an EpiPen, but we never carried it around,” he says. “If something happened, [my family] would call 911.”
In this he’s not alone either; McGarr and his colleagues found that many allergic adults cite the proximity to a hospital or easy access to 911 services as yet another reason not to ready themselves with an auto-injector.
Like Koentges, Adev Ahluwalia is another whom allergists would dub “non-compliant”. A father of two and realtor working the hot Calgary housing market, he admits he doesn’t take his allergies “as seriously as I should.”
Of his auto-injector, Ahluwalia says: “I saw it the other day. But I don’t think it’s valid any more.” Besides, “I can’t remember if I’m supposed to punch it in my leg or, like in Pulp Fiction, stab the thing in my chest. I think it’s my leg.”
As a boy, Ahluwalia had minor reactions to cashews and pistachios, but only visited the doctor about his asthma, never about these allergy symptoms. Then in 2003, he had a significant allergic reaction at a friend’s 40th birthday party. He ate a chicken skewer, not realizing that there were nuts in the marinade. Soon his throat began to close, and he felt as if his chest and stomach were “knotted up.” He struggled to breathe.
Next: Adults think they can just ‘avoid the food’
The party was hosted by a doctor, and another physician friend named Paul watched over him, and kept asking whether he wanted to go the hospital rather than toughing it out. Ahluwalia declined; “I hate hospitals.” He figured he was better off anyway being watched by Paul.
But one thing Paul insisted on was that he get to a specialist “to find out exactly what you’re allergic to.” A Calgary allergist diagnosed an allergy to nuts, related to his sensitivity to the birch tree family, and including nuts, apples, cherries and peaches. Ahluwalia was prescribed and bought an auto-injector.
So why doesn’t he carry it? “I try not to take it [the allergy] too seriously, otherwise it would drive me and everyone else crazy,” he says.
McGarr finds the tendency of allergic adults to minimize the risks of anaphylaxis is common, and often accompanied by statements such as “I won’t let this control my life.” Tied into control is the belief that you can simply avoid your allergens.
In the study conducted for EpiPen in Canada, fewer than 40 per cent of the “at risk” group agreed they might not be able to avoid their allergen in every situation. As an example of avoidance and control, these people would speak of their restaurant choices. Those with peanut allergy would steer clear of Chinese restaurants because they use peanuts in the food. With tree nut allergy, an individual might pass on Italian restaurants due to pine nuts in many dishes.
Once inside a restaurant of their choosing, the “at risk” adults had a strong sense of trust that the kitchen would safeguard their food. “The belief in being able to avoid is very, very strong,” says McGarr, calling it the biggest single factor in explaining why so many allergic adults don’t carry an auto-injector.
Another recurring belief was that reactions would stay the same in both severity and frequency. If they had been mild and infrequent, in this group’s minds, that would always be the case.
McGarr describes this as a difficult mental construct to tear down: “Believing it is a powerful impulse because as human beings we are pattern recognizers.” If we’ve seen what happens with one or more exposures to our allergens, we believe we know what will happen.
Humans are also known for a capacity to forget about pain once the pain is gone. McGarr, who specializes in health-care research across North America, notes that even in patients who’ve had serious cardiovascular events like strokes, the longer it has been since the experience, the less vigilant the patient may become with prescribed medications.
In anaphylaxis, this will surface in the chances people take around food and in getting increasingly less concerned about keeping an up-to-date auto-injector. For instance, that EpiPen that Ahluwalia couldn’t remember how to use? It’s five years old, while epinephrine loses its potency after one year.
In his case, there’s also a hefty dose of denial. While Ahluwalia is at a higher risk since he has asthma as well as allergies, he has even eaten an apple slice just to see if he still reacts. Nor does his family take the allergies seriously. His mother will hand him some kicharee, his favorite East Indian comfort food, made from lentils and rice. She stores its ingredients in used cashew jars.
Though he gently admonishes her, he’ll still cook and eat the food from the jars (so far to no ill effect). “I don’t believe I’ve ever been close to death,” says Ahluwalia. “I’ve been in severe pain, but not close to death.”
Next: Doctors’ advice crucial to awareness
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While many allergic adults are laissez-faire about the risks they face, Muñoz-Furlong is not. “I am scared for the adults,” she says. “It is heartbreaking when I have had to speak to a family and someone in that family has died [from a reaction]. And when I’m talking about an adult, it’s somebody’s mother or father or brother – there’s the impact on the entire family.
“These deaths can be prevented with some education and preparation, and I just wish the adults would really value their lives as much as they do their children’s.”
McGarr agrees better education is important. But he thinks the need goes even beyond it, and that this community would benefit from behavioral psychology studies about the sense of denial, and the need to feel in control and minimize risks.
For every cavalier allergic person, he notes, there is also another non-compliant adult who diminishes the condition because he or she finds it difficult to face up to the unpredictability of anaphylaxis. “Raising the alarm bell isn’t the only answer because you’re going to have a large proportion of people who just feel overwhelmed.”
He says there has got to be better communication with these patients, so that they understand the precautions – from food label reading to owning an auto-injector – are the life jackets, the providers of control. This begins on the front lines in the family doctor’s office, where many allergies are diagnosed.
From research with primary care physicians, McGarr has seen both the time constraints and the pressure doctors feel to assure patients that their allergies can be controlled.
“In an effort to assuage a patient’s upset and anxiety, the well-intentioned doctor may inadvertently send out signals that suggest ‘this isn’t too serious; you have a mild allergy,’” he says. In the patient’s mind this gets picked up as: “I don’t need to worry – or take protective action.”
If there’s one place McGarr would start with the adult risk-takers, it’s with the severity question. Until tests can reliably predict a person’s anaphylactic risk, “it would really be helpful if everybody would strike the concept of severity out of their minds. It’s counter-productive in inspiring the right behavior.”
As for Koentges and Ahluwalia, we don’t know if they’ll ever accept the condition is life-threatening or become reliable carriers of auto-injectors. But perhaps reading this will at least make them pause, and consider the volcano that gurgles underfoot.
First published in Allergic Living magazine.
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