How my food-allergy community “flips the clinic”

May 10-16, 2015, is Food Allergy Awareness Week.

I am grateful to the women (and a few men) who help me care for my son with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources.

We are part of a regional food-allergy Yahoo group (yep, an old-school list serve). Many of us see the same allergists in the DC area, yet few of us have kids with the same exact constellation of allergies. Some are parents of babies and toddlers in the diagnosis stage, others have middle- or high school-age kids, and yet another group is already navigating “launch” (the college years). This large and diverse pool of advisors turns out to be a wonderful resource as we all bring different experiences to the discussions.

All the daily work of protecting our kids from allergens happens at home and at school, not during the 15 minutes we get with our clinician. I calculated that one year without an incident represents the prevention of 1,500 adverse events — 3 meals and a snack x 365 days. My online community and I regularly “flip the clinic” by preparing for — and recovering from — our clinic appointments by sharing questions and experiences with each other.

In this excerpt from a panel at last year’s Stanford Medicine X, I shared how I see the work we do as a public service, a gift that can never be repaid (skip to minute 16 if it doesn’t load up automatically):

Feeling part of a supportive community is one silver lining of being a food-allergy mom. Debra Jacobs, another member of the group, shared another:

What do we want for our preteens, teens, and young adults as they go off into the world?

The ability to say, “No, thank you” even though everyone else may say “yes”

The courage to not eat/drink/smoke what everyone else is

The habit of observing what others are doing to avoid unsafe situations

The practice of planning ahead for what might happen later

The tricks for remembering what one needs before leaving the house

…and friends who are used to hearing you say, “No, I can’t” and being accepting of your differences.

Bonus: Knowing how to handle a medical emergency!

For more about my experience as a food-allergy mom, see:

• 20 minutes (how I train my son’s teachers each year)
• Food Allergy 101 (we need to upgrade public education materials)
• The Teal Pumpkin Project (inclusion can be beautiful)
• Thank you, Sean Parker (a landmark gift to research)