When my husband and I tell people that our kids have multiple anaphylactic food allergies, their response is usually some version of “how awful!” or “poor things!” And, truthfully, when our daughter, Senna, had her first food-allergic reactions as a toddler, we pretty much felt that way, too.
We watched Senna’s precious face break out in raging hives, then the severe facial and throat swelling that often occur during the life-threatening allergic reaction called anaphylaxis. We had to call 911, give her a life-saving Epi pen injection, race her to the ER, then later watch her tiny self endure blood tests, skin tests and diagnosis. Not to mention how all of this changed our experience of things like restaurants and airplanes. Back then, it felt, well, awful.
Now, five years later, our attitudes have changed — a lot. This year, when Senna started kindergarten, she and I worked together to create a positive and empowering training about anaphylactic food allergies to present to her teachers, schoolmates, and their parents. When she told her class about her multiple food allergies (which include peanuts, most tree nuts, sesame seeds, eggs, fish, and milk), she said, “I wouldn’t trade it. I’m happy with what I’ve got.” From the mouths of babes. Well, in this case, our babe was quoting one of the people who changed our family’s life: Canadian Food Allergy Musician, Kyle Dine.
Senna’s line is actually from the song, “Food Allergies Rock!” — the title track on one of Dine’s albums. And, today, at Village Gate Academy in Encinitas, Senna got to bring her role model Dine to visit her hugely supportive school as part of Dine’s San Diego tour, which culminates in a public concert at tomorrow’s annual FAAN Walk for Food Allergy on Mission Bay.
Dine — who is allergic to peanuts, nuts, eggs, seafood and mustard — says he wasn’t always so positive about his food allergies. As a child in the early 80’s, before Epi pens even hit the market, he often tried to hide his allergies. He had an epiphany at age 21, after a series of severe reactions that he calls “very close calls” — he realized he could no longer afford to hide. He began to speak out, advocate for himself, educate others, build allies, and, as a musician, to write music that “sees the bright side of allergies.” The messages of the catchy, modern songs on his two albums urge kids with allergies to do the same.
In short, it’s really not so awful if you look at it differently.
It is this perspective of Dine’s that helped our family realize a major part of food allergy education — along with understanding triggers, symptoms and treatment — is attitude education. So, now, when we train others, we stress how important it is to focus on the foods our kids can eat and the many activities they can do (rather than what they cannot), and that no pity is necessary or helpful. In our case, we also share how anaphylactic allergies have positively helped us become more conscious eaters, grow closer as a family, know who our true friends are, and live a much simpler lifestyle. Of course, watching our children go through life-threatening reactions also makes us evermore appreciate the healthy days, and each day we have together.
Things have come a long way since the 1980’s when Dine was diagnosed, too. People have become more aware of anaphylactic allergies, which affect more than 12 million Americans (one out of every 25, or 4 percent of the population), including 3 million children, and result in over 300,000 ambulatory-care visits a year among children, according to the CDC. The leading non-profit for food allergy information, programs and resources is FAAN (the Food Allergy & Anaphylaxis Network), which has grown since its founding in 1991 to now include approximately 30,000 members in the U.S., Canada, and 62 other countries, with annual fundraising walks in 44 cities throughout the U.S.
While it is certainly negative that anaphylactic allergies are growing each year (and it’s basically a mystery to scientists as to exactly why), it is positive that members of the “first generation” of multiple-food-allergic adults, such as Kyle Dine and Allergic Girl author Sloane Miller, are emerging as role models for the anaphylactic community. And while there still exists some fear, confusion and resentment among some people when it comes to food allergies, more and more individuals and schools are approaching this health reality of our time with a “can-do” attitude, and helping their communities navigate the tricky terrain of foods that are healthy for most being potentially deadly for some.
In the , Head Nurse Julie Hart-Lawson is an active member of FAAN and keeps abreast on the latest food allergy research and information. She says there are 138 registered Epi pens in the school district, not including for staff, many of whom carry their own, including for bee sting allergies.
“Our district is food allergy aware,” Hart-Lawson says. “The teachers are very positive and open to it. In fact, one of our schools, , asks to have all 172 teachers get Epi-pen trained every year.”
There is not yet a uniform food allergy education policy in Carlsbad schools, nor in most U.S. cities and states. But, in Ontario, Canada, where Dine lives, there is Sabrina’s Law (named after a child who tragically died at school from an anaphylactic reaction), which requires all schools to educate about food allergies.
Dine’s tour of North County schools this week — and his performance on Mission Bay tomorrow — will hopefully help educate many more local kids and adults about both the realities of anaphylactic food allergies, as well as their “bright side.”
He sure taught our family to see anaphylaxis (which also affects our son with foods and my husband with bee stings), as not so awful after all — just something that makes us stronger.