“I remember in college one time this couple invited me over for dinner, and they were having pork chops. I’m allergic to pork, but I was too embarrassed to tell them that I couldn’t eat it,” recounted Dawn Grabs, a representative from Food Equality Initiative, about her experience advocating for her food allergies. On September 9th, 2021, Dawn and 3 other FEI representatives attended the Food and Drug Administration’s (FDA) Externally-Led Patient Drug Development Meeting (EL-PFDD). They were there to advocate on behalf of Food Allergies in Washington, DC. The purpose of EL-PFDD meetings is to “more systematically obtain the patient perspective on specific diseases and their treatments.” And for food allergies, that means hearing the experiences of individuals with or caregivers of individuals with food allergies.
Dawn has never classified herself as an advocate.
She has lived with food allergies for the majority of her life, but she did not want to inconvenience or burden anyone with her dietary restrictions. Sometimes that put her in a dangerous situation. “I went to the dinner and I just tried a little bit. I thought maybe I can do it this time: nope! After I ate a little bit, my throat started swelling. I took a Benadryl and I took my inhaler and it slowly stopped, but I was miserable all night, all because I was too embarrassed to turn down what my friends were fixing.”
Dawn was raised on a farm in Iowa and, ironically, is allergic to the items she ate a lot of as a kid on the farm: pork, dairy, and eggs. “I also have other food allergies to nuts, corn, wheat, beef, and oats, which I can eat in small amounts, but will break out into hives or eczema.” She also has pretty severe environmental allergies, which was hard to deal with as a farm kid. Growing up, Dawn did not know anyone else who had allergies like she did, so she never talked about it and instead worked to hide her conditions to fit in with those around her.
She is now 42 and advocating for food allergies for the first time, and she is doing it on a national scale. “I feel like there are no treatments that are effective for food allergies. I hope to encourage the FDA to support new research.” But, just like in her college experience with her friends’ dinner party, Dawn was hesitant to attend the EL-PFDD when Emily Brown, founder of Food Equality Initiative, asked her to go. At first, she said no.
So, what changed her mind?
“Emily said it would be really important to have someone who has allergies themselves as an adult. So, then I thought about it and a couple weeks later I woke up in the middle of the night and said, ‘I need to go. Someone can benefit from my story.’” People need to know what it is like to be an adult with food allergies. That narrative is not as common, even though for Dawn it had become second nature. Dawn participated as an advocate on Panel 2: Patients’ Perspectives on Food Allergy Prevention and Treatments.
“The main thing that I know that I noticed was how having food allergies is very stressful; I don’t think about it this way for myself really because I’ve just learned to live and cope with what I have. But listening to other people made me realize that I’m not alone. Food allergies do affect my stress levels and overall well-being,” Dawn reflected.
Did attending the EL-PFDD help Dawn become a better advocate for herself?
“Most of my life, I’ve been embarrassed by my allergies. I don’t talk about them. Instead, I just try to avoid events with food. I don’t like to ask people to cook special food for me or to not go to a certain place. But now, I feel more empowered to share my story and that it is okay. It’s not embarrassing, it’s just my reality. There are a lot more people out there than you realize that have food allergies; we cannot get support if we don’t talk about it.”
Dawn is glad that she went on the trip to advocate in person. Not only was she able to tell her story, but she got the chance to hear others’ stories and feel a sense of kinship and validation that she did not know she needed. “It was pretty powerful. I feel like this conference validated my experience; it empowered me to encourage other people to talk about their struggles, too.”