Featured blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series.
I’m here at FABlogCon. It’s a conference for food allergy bloggers. But it’s so much more. There are bloggers, speakers, authors and medical experts. There are people working real hard to bring innovation to the allergy world. Like gluten test strips (strips that you could stick into food to see if there is gluten). Or people making smart cases for EPI pens so that kids and parents can be connected via their phones to get alerts when the EPI is too far away, to track and find expensive-to-replace EPI pens, and to immediately alert parents if an EPI pen is pulled. Amazing, right?
BUT THEN there were Sun Cups. You know, like peanut butter cups but without peanuts or nuts of any kind. But with sunflower. AND they’re launching a newly modified version real soon –- one that is going to be even MORE allergy friendly. I tried one. Or two. Or like SIX of them today (shhhh, don’t tell!).
But all these people – all these people here- they’re centered around this conversation, around food protection and advocacy.
And you know what? I feel at home. These are OUR people, you know? They get us. They live, breathe, make, advocate and plan food. And it doesn’t feel so lonely when you put all of us together in a room.
Thing is, here I feel like the kid sister. I’m just FPIES. I’m new. I’m a baby in the world of food allergies. And by that I mean, WE. We are FPIES. We are young. We are infants in the world of food allergies.
But you know what big sis says: I just heard about that. Tell me more, they say. (I’ve heard this all weekend long.)
They want to know us. They want to hear us. They know we exist, and more and more they are starting to know we’re here. And we’re finding our voice.
I got to hear guest speaker Robyn O’Brien, a crusader who looks at the impact the food system is having on the health of children. I loved her. Like a whole lot. And she was talking about lots of good stuff but there were two things that she said that I held dearly in my heart as she spoke them:
ONE. Advocacy and Love. That was the title of one of her sessions. It’s nice, right? She talked about the first year of having her child diagnosed with a food allergy. The grief, the anger, how mad she was. But then she realized that she was just angry because she loved sooo much. She shared that she at arrived at the notion that to love for a lifetime would bring change, but to be angry and mad would only lead to self-destruction. Love. You guys, it is love that drives us.
TWO. I wished I had faster fingers on my phone so I could quote her directly, but she talked about the day when she will have a long silver ponytail. She wants to be able to look back at the now, look back at the work being foraged right now and KNOW she was there, that she made an impact.
So here’s my thing. Remember how I said I feel like I’m the little sister? Like we, FPIES, are the little sister? We are. We’re not the same as our big grown-up food allergy siblings. They have given us big shoes to fill, they really have. And we need to grow into them. We have SO many commonalities, right? I mean we’re from the same family. But we are different. And we need our own voice.
And Robyn says: DO ONE THING.
And we can do this, yes? Robyn says it looks a little something like this:
Start a book club.
Host a movie night.
Host an evening at school, at a church or at a preschool.
Partner with a pediatrician or allergist.
Start a blog. A company? Maybe a non-profit or a support group. Volunteer.
Whatever it is. However you do it. Believe in your ability to create change.
May we grow long silver ponytails and look back and say: We did that. We brought, sought and created changed. We gave FPIES a voice.
And may the world respond and say, BRAVO!