I was inspired to study allergies for my dissertation research because of my own unsatisfying experiences with allergy testing, allergy immunotherapy, and lengthy series of stomach problems. I went through these medical procedures beginning when I was 22, though I had long had an unhappy tummy and chronic sniffles. I was an adult with a full-time, professional job right out of college, supporting myself and paying all of my own copays and deductibles for tests and medications. I wanted answers, but I also had to be pragmatic about how many tests I could do and how many medications I could try. I just couldn’t afford to throw all of my time and money into doctor’s appointments at that point in my life. I had to balance that with paying other bills, spending time with friends who were in their senior year of college, and plotting my next career moves.
When I started my research, I didn’t anticipate the degree to which food allergy support groups and advocacy efforts were aimed at protecting children and supporting the parents of kids with food allergy. I had talked through the project with my advisors, and the one advisor who had kids suggested that school policies for food allergies might be an interesting topic to look into. It was certainly one she had become well-acquainted with; even though her kids didn’t have food allergies, it was a regular topic of conversation among parents in the town and at PTA meetings.
Sure enough, from the first interviews I conducted with people involved in food allergy support groups last fall, I found myself talking about school, daycare, field trips, and school cafeterias. I was directed to websites with excellent tools designed to help parents manage their children’s food allergies in schools, like AllergyHome and Kids with Food Allergies. I soon discovered that political advocacy efforts focus on kids, too. For example, recent efforts to pass stock epinephrine legislation in states across the US are mainly focused on stocking epinephrine autoinjectors in schools. There also are summer camps that work hard to accommodate kids with food allergies and lots of manufacturers of allergy-safe, kid-friendly packaged snacks. Lots of hard-working adults are trying to make life as safe and normal as possible for kids with food allergies.
As I dug deeper, I discovered that there are resources targeted at adults managing their own food allergies, too. And no wonder: According to this fact sheet from FARE, which summarizes key statistics from recent research on food allergies, as many as 9 million adults are living with food allergies. That number is only going to rise as at least some of the 6 million or so children with food allergies grow up and go out into the world on their own. A lot of the materials I see that are targeted to adults with food allergies are meant to help adults manage anxiety around social situations that require them to eat outside of their own homes. There are, for example, excellent books for people with allergies, like Sloane Miller’s book Allergic Girl, and restaurant-training programs like those provided by Food Allergy Gal.
I think part of this family focus is due to the biology and epidemiology of the disease. Biologically, many people develop food allergies as children, and lots of children outgrow at least some of their allergies by adulthood. In addition, the epidemiology of the disease shows that rates of food allergies in children have been rising in recent decades. Some of the most challenging aspects of living with food allergies come on the heels of a food allergy diagnosis: learning to cook without allergens, learning to read food labels, learning how to objectively monitor one’s body to detect symptoms of a reaction, learning to advocate for oneself in a variety of public and social settings. When a child is diagnosed with food allergies, it becomes an issue for their entire family, since they can’t do things like shop, cook, and advocate for themselves at school on their own. In a way, it seems “natural” that there is a lot of attention paid to food allergies in families and children.
But I would argue that the particular kinds of support offered for kids and families deal with food allergies ares not entirely “natural.” “Natural” is a word that makes social scientists shudder. Usually, if you dig deep enough, there are layers of human behavior and custom superimposed on the “natural” aspects of an illness.
One thing to consider is the strong moral imperative across many societies to provide extra protection to certain groups who are regarded as vulnerable, like children, the elderly, and people with disabilities. Within the world of food allergies, you can observe a wide array of the kinds of support that US society offers to vulnerable groups: demands for morally responsible behavior on the part of individual parents, families, and caretakers; advocacy from non-profit organizations like FARE and KFA that raise the profile of the group and their particular issues; versions of cultural traditions (like summer camp) that are tailored to the needs of food allergic kids; and legislation that regulates aspects of the social and physical environment to make it easier for kids with food allergy to live like anyone else. These are socially acceptable ways to manage a disease in a vulnerable population in the United States today, adapted in particular ways to respond to the biology and epidemiology of food allergies. I doubt that they’re universal, though I can’t say for sure, since my project is currently focused on the US context.
What do you think about the focus on family and children in food allergy research and advocacy? Has this focus helped or hindered your own attempts to manage food allergies for yourself or someone close to you? If you have experience working in allergy research or advocacy in another country, what do they do there, and how does the approach in the US compare?
I think you are right that the disease process is a big factor here. I don't know if you want to compare communities but the RA community is geared to adults and they seek information about themselves differently than a parent seeks allergy information on their child's behalf. Maybe because we as parents are trying to understand how it feels to have food allergies while an adult with food allergy reaches out to physicians and not support groups for answers. All speculation, of course but you are right that it is an interesting phenomenon. At the Food Allergy Bloggers Conference we have many food allergic adults in attendance and though topics like 504 plans aren't their thing, they still care about them from an advocacy standpoint.