Feeling All the Feelings at the 2018 FARE Research Retreat

In this guest blog post, food allergy mom Lydia Goldfine takes us inside FARE’s recent Research Retreat, which on April 13-14 gathered more than 130 scientists, clinicians, parent advocates, pharmaceutical industry representatives and government representatives for an annual meeting to discuss the future of food allergy research and patient perspectives.

As the parent of a food allergic child, I feel all the feelings of parenthood through the lens of food allergy.  Today is no different, except when I get goosebumps at 11:15, a psychosomatic response to my boy eating lunch at school, I am sitting in a dimly lit ballroom in Virginia rather than at home. Unlike most days, today I am attending FARE’s annual Research Retreat and, therefore, I am surrounded by parents of food allergic children, food allergy advocates, scientists, psychologists and food allergic adults. When it comes to feeling all the feelings of food allergy, today, I am not alone.

Another parent and I sit side-by-side, fixated on the presentation. The researcher is describing a ‘vaccine’ that reduces the severity of anaphylaxis in humanized mice. I am quietly, awkwardly laughing, wondering what the words ‘humanized’ and ‘mouse’ might mean when the other mom leans forward and says: “Let’s pretend that we are best friends.”

We are both members of FARE’s Outcomes Research Advisory Board (ORAB), and we are here at the FARE Research Retreat not only because we each parent and love a food allergic child, but also because we have donated our professional capabilities and our personal time, working together to support the food allergic community. We have so much in common; I know she will understand when I say: “I am feeling all the feelings.”

Full disclosure: I am primed to feel all the feelings; the ORAB members are not tasked with understanding the word combination ‘humanized mice.’  Rather we are gathered to evaluate and positively contribute to the other side of food allergy, not the physical impact on the body, but the psychosocial impact on the mind. We strive to identify, anticipate and mitigate the feelings of the food allergic and their families in their everyday lives, both before and after a reaction. 

We parent-advocates come off so steely, so sure in our ways. “This is working for us and we’re not interested in talking about change…” Sound familiar?  We present so self-assured, when really, are we? No! None of us can be. There simply isn’t enough information about our children’s disease to be fully informed and confident in our approach to managing the worry, avoidance and risk mitigation that comes with our kids’ diagnoses.

I have come to realize that it is possible to feel fear, anxiety, remorse, embarrassment, questioning, responsibility, courage, strength and hope simultaneously. I know this because the prognosis of a food allergy diagnosis is hardship: the symptoms are subtle; the consequences can be scary; the cause is not well understood; there are no treatments or cures; the disease is entirely managed socially; and prospective therapies are a decade from market. A food allergy diagnosis is nothing if not daunting.  The diagnosis is heavy with emotion.

Therefore, I feel profound gratitude for all the scientists who have dedicated themselves to solving my son’s unique challenge, and that of the 15 million Americans like him. And although there are so many questions in food allergy that we must address, it’s wonderful to learn that the scientific work currently being done is valuable and rigorous.

For two days I am sensitive as I listen to the brightest minds in food allergy share their passion.  I am excited. I am proud to be here learning about this work, honored to be among these people who are driven to understand food allergy, compelled to find a solution that will positively impact my son’s life. I am thrilled by the possibilities that their research promises to make a reality. Personally, I am motivated to work harder, to stay focused and continue to use my energy and effort to help address the psychosocial needs of the food allergic.

That said, ‘retreat’ is a misnomer. This is neither restful nor restorative. This conference is the momentum of scientific progress and the sorrow of a diagnosis wrapped up together. Which is why, sitting here, I feel vulnerable; and it isn’t the continued comparison between my son and a research mouse that has me on the edge of tears. It is the sobering reminder that this is real. This is a very real disease, with tangible risks and consequences; and yet thankfully, one with substantial scientific resources. At the same time, I am feeling uneasy and so very appreciative of FARE and the scientists that they support.

Feeling overwhelmed, I might cry, but I am willing myself not to make a scene.  Despite feeling energized and at times happy, being at this research retreat illuminates an aspect of my life that I rarely share, bending my emotional barriers and warping my coping mechanisms. Here, everyone is talking about and living with food allergy. Their experiences validate mine; I am not alone in this.

And, as we say back home in New Mexico: “This is the whole enchilada.” It is time to get emotional.  The food allergic community has arrived, the ball is rolling, several scientific solutions are on the horizon, and the time is right to capitalize on that momentum and motivate the food allergic community to address their reality at full volume: “Food allergies are real; they have vast consequences on quality-of-life, and we need psychosocial support to live happy and healthy lives.”  Persistently, we are on our way.

Lydia Goldfine is a member of FARE’s Outcomes Research Advisory Board and the mother of a 7-year-old boy with multiple life-threatening food allergies.