By Susan Weissman
As a long-time but no-less-weary food allergy mom, author and advocate I’ve attended the FARE Annual Spring NYC Luncheon for several years running. Yet there were years when I didn’t know why I was there until it was nearly over and the chairs were being rolled back. Why take the time and energy to show up at a food allergy event, if even for a few hours, when we food allergy parents have to contend with our day-to-day meal and safety logistics? I can mail in my check and eat my sandwich in the comfort of my kitchen while participating in several online food allergy support groups as is often the case normally. In contrast, the FARE Luncheon is gathering of the food allergy community – doctors, parents, family, and supportive friends. It is a crossroads of fundraising, education, advocacy, and self-assessment. That is a lot to take in when you live in the trenches of a medical condition. And yet, clichéd as it may be, I’ve always come away with an invigorating sense of community. So I return.
Most years, the keynote speaker is someone who may be a rock star to the audience, but is laboring in relative obscurity as far as the general public is concerned to free our children from this infuriating condition. But this year it was Dr. Kari Nadeau, whose work is riding a current wave of publicity because of a recent cover story of the New York Times Magazine.
Coincidentally, I began my day in Brooklyn attending my daughter’s 8th grade science project exhibition – a research-based display of scientific hypothesis presented in the school cafeteria. These teenagers had tested the physical, biological and psychological properties of various subjects, including their peers. Then, a subway ride and five hours later I had the pleasure of hearing Dr. Nadeau speak about her science project. She, her colleagues, and her “subjects” had just completed the first trial phase of a treatment combining oral immunotherapy in conjunction with the drug Xolair. The trial brought the children participating from anaphylactic levels of reaction to varied tolerance, which in this crowd spells progress and hope.
Inspiring though she is, Dr. Nadeau is realistic. At one point she reminded the crowd, “We are only as good as our research allows us to be.”
To me, it meant that the same way my daughter had tested her scientific theory, once, within limited time and context, so Dr. Nadeau was pointing out that her work has not resulted in food allergy treatment … yet. It is still research. The children who are eating their daily allotment of nuts, dairy and egg are my daughter’s poster board: A result of hard work that needs more hard work to progress, and work that inherently risks failure while striving for success.
In the spirit of Dr. Nadeau’s caution, I also have reservations, and I’m going to share them here. For a start, oral immunotherapy scares me. Badly. Having experienced terror at watching my son react, and applied my intellect to its limits to study the problem and seek solutions, the subject permeates every part of me and even good news awakens a thousand doubts. It is a medically risky therapy that necessitates an IV, a medical facility and a staff that is trained to monitor subjects and perform life-saving measures. Not be tried at home.
As real as the here-and-now misgivings are, they are compounded by the prospective ones. No one knows for how long food tolerance will maintain. The emotional template for my own fears was forged a long time ago when I read the novel Flowers for Algernon, the story of a mentally impaired man who receives treatment and progresses to brilliance and then reverts once again. I cried inconsolably. The thought of my child finally tasting the relative freedom while risking the potential of an allergic reversion of sorts is extraordinarily painful. Of course.
Kari Nadeau knows this emotional territory. She let her audience know that she understood the animal that is multiple anaphylactic food allergies. She confessed, “I had allergies growing up.” And then she elaborated how her physical discomfort drove her towards medicine. She is famed for her devotion to food allergy treatment and reverence emanated from her face as she spoke. Almost seven hundred people listened attentively.
When the tables were being cleared, it occurred to me that this luncheon felt a bit different than in the past. I felt revived not just by feelings of bonding and shared fate with the crowd. I felt a tangible and new momentum towards food allergy treatment along with a collective understanding: We parents must respect the nature of that which we dare to do for our children, both for the possibilities and for the limitations. We must challenge our doctors to do better, but we must also encourage them to practice their best science.
Susan Weissman is the author of FEEDING EDEN the Trials and Triumphs of a Food Allergy Family , a memoir published by Sterling. Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post, Allergic Living, and various sites on the topic of allergies and parenting. Find resources for parents and children with allergies on her own blog by clicking here. You can also read her previous posts for us here and here.