Food Allergies: “The mental anguish can be overwhelming”

In 2019, the Asthma and Allergy Foundation of America (AAFA) conducted a three-part study on “My Life with Food Allergy.” In the first report from the study, parents and caregivers of a child with food allergy relayed the impacts that caring for that child has had on their family...

… SOCIALLY. “The hardest part for me is just never letting my guard down. There are no breaks from food allergies.” Because food is a fundamental part of many daily activities and social events, families that have a child with food allergies must be constantly vigilant to keep the child safe. The fear of an allergic reaction, particularly that of anaphylaxis (a severe, life-threatening allergic reaction), can take a heavy toll on children and their caregivers. Parents of children with food allergies can experience anxiety, depression, isolation, and stress associated with the risks of reaction and possible societal stigma.

… MENTALLY. “Food allergies are a hidden disability and the mental anguish can be overwhelming.” One of the most challenging activities to navigate is that of dining out; this is due largely to the lack of standard regulations and policies for labeling and staff training in restaurants and other establishments that serve food. For many parents and caregivers, the constant fear of accidental exposure to food allergens leads to a loss of normalcy and results in adjustments in decision-making and daily routines. Acute awareness at every meal and in every new environment can be stressful.

… FINANCIALLY. “Buying allergen-friendly foods for my son more than doubled my weekly grocery bill.” Nearly half (44%) of parents surveyed rated the financial impact as a 4 or 5 (on scale of 1 “no impact” to 5 “major impact”). And 44% said they or their spouse had to make a career choice (such as quitting or changing jobs) to care for their child with food allergy. That decision had a negative impact on the household finances for 84% of those, with 49% incurring increased debt, and 28% having to seek social assistance.

… EMOTIONALLY. “The food labeling is so confusing — I’m a physician and my husband is an attorney, and it’s incredibly confusing.” Currently, the standard of care for food allergies requires strict avoidance of the allergen. This means that parents of children with food allergy must be able to accurately identify potential allergens in all foods and products. The lack of standardized regulation around precautionary allergen labeling leads to increased anxiety and fear among parents and makes it more challenging to navigate daily life. Precautionary allergen labels are voluntary, and manufacturers use non-standard phrases to warn consumers about possible cross contact with potential allergens due to shared equipment or shared facilities. Fear of cross-contact and accidental allergen exposure due to weak labeling laws necessitates significant time spent communicating with manufacturers to better understand the risk imposed by each product.

As reported in the study, 90% of respondents said their child had experienced a severe reaction at least once. Additionally, the symptoms experienced most commonly were:

85% – Skin redness, rashes, itching, and/or hives

59% – Mouth/tongue itching/tingling/burning

57% – Stomach pain, vomiting, or diarrhea

51% – Swelling of the lips, tongue or throat Itchy/red eyes, runny nose, sneezing

45% – Shortness of breath, trouble breathing, coughing, wheezing

Source: Asthma and Allergy Foundation of America. (2019). My Life With Food Allergy: Parent Survey Report. (www.aafa.org/foodallergylife)