Gayle Rigione, Allergy Force
Growing Your Food Allergy Know-how & Community
When you are newly diagnosed with food allergies and/or related conditions you can feel overwhelmed, isolated.
For some, the inclination may be to submerge until you’re more comfortable living in your brave new world, post-diagnosis. Others may cast a wide net to connect and tap into the practical knowledge the food allergy community freely shares.
Regaining your footing after such a life-altering diagnosis — however you choose to do it — is all important. Read on for some ideas for doing that.
I was probably more in the ‘submerge’ camp as a food allergy parent when my son with food allergies was younger, and I pretty much stayed ‘submerged’ through his teens. We relied on whatever lifeline our immunology practice threw us during annual visits, and worked to live our allergic life (with asthma) as best we could. Without reaching out. Without connecting into the growing, increasingly accessible food allergy community.
In 2018 I had the chance to attend a FARE Summit in the DC area and it wasn’t without some regrets that I hadn’t found it sooner, attended it sooner, and included my son with food allergies when he was a younger teen. I recently had the chance to attend the CFAAR-organized FACES conference in Chicago. The conference was especially for families diagnosed with food allergies and related conditions. I 'filled up my tank' with up-to-date knowledge, new connections with amazing families, and most importantly, hope, in just a day and a half.
“If you want to go fast, go alone, if you want to go far, go together”
—African Proverb – Martha Goedert
I encourage everyone — regardless of where you are with your diagnosis, regardless of whether you’re a connector or not — to try and attend a food allergy conference with your family, at least once, for yourself, for your kids.
These conferences are opportunities to deepen your knowledge base on atopic disease — what drives it, how it presents, how it’s diagnosed, what treatment options are available, where research is taking us.
They are opportunities to find resources — food products, medical treatments, technology, mental health, hacks, ‘how to’ information — that can help make allergic living much easier for your family.
They are a chance to meet other families living with similar challenges and learn from each other, while finding reassurance and connection.
When your kids/teens with food allergies attend with you, it’s a chance for them to meet other kids/teens just like them, to learn tips and tricks for staying safe, and building confidence to speak up and out about their challenges and needs.
If you weren’t able to make the FACES conference this year, there is always next year and, in the meantime, the other food allergy organizations will host their first in-person conferences in a couple years as COVID-19 calms down.
Apfed (American Partnership for Eosinophilic Disorders)
Apfed will host its annual patient-education conference — EOS Connection — in San Diego, CA, July 7-9. Apfed has a number of travel grants available for eligible families.
FARE (Food Allergy Research & Education)
FARE will host its Food Allergy Summit 2022 in Orlando, FL, September 23-25 with tracks for families, pre-teens & teens (11 to 19).
FAACT (Food Allergy & Anaphylaxis Connection Team)
FAACT will host its 7th Annual Teen Retreat in Oak Brook, IL, October 28-30 with tracks for pre-teens & teens (11 to 23) and parents/caregivers.
I understand it can wreak havoc on the family budget to travel to a conference, book a hotel, and possibly take time off from work. But it's something to plan for, work towards in the future, if not now.
This doesn’t mean you can’t connect with community for moral support and know-how if you’re ready to.
Other (budget-friendly) ways to find connection and know-how
Consider joining some support groups.
Choose your groups with care as some foster more positive and caring spaces than others. Always be sure to fact check health-related information shared in groups with your healthcare provider to verify that it's current and accurate.
You will find a warm welcome and community when you join FB groups like FRIENDS HELPING FRIENDS, NNMG Food Allergic Family Forum, and FAACT's Parents of High School & College Students with Food Allergies.
There's also MOCHA (Mothers of Children Having Allergies), a support group that shares resources and information from diverse, reliable sources. Sign-up for MOCHA's newsletter to stay updated on upcoming events and resources in the allergy world.
The important thought I want to leave with you is that you are not alone on this food allergy journey, even if it feels lonely at times.
Everyone’s journey through life — allergic or not — is unique and not without peaks and valleys. Emily Brown, founder of Free From Market and past CEO of Food Equality Initiative spoke at FACES and shared a thought from JayZ that stayed with me: “The genius thing was that we didn't give up.”
So keep moving forward, keep equipping yourself with community and knowledge that help you live your best life with food allergy.
"Food allergies won’t define us if we don’t let them."
About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. These experiences inspire her to create tech tools for people with food allergies. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
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Credits: Image, Porapak Apichodilok on Pexels