From Food Allergy Diagnosis to Confidence: A Guide for Safe Living

Introducing a guide by Allergy Advocates NY that's a ‘must-read’ if you’ve walked out of an allergist appointment with a new allergy diagnosis and an epinephrine prescription in hand. Please download it, read it, take it to heart, and share it with your entire village, near and far. It will be your roadmap to navigating allergic life safely and confidently.

Allergy Advocates NY has created a four-part guide – Allergy Awareness: Navigating a New Normal – that equips you with the knowledge you need to live freely and fully with food allergies.

As a long-time food allergy parent, I can’t help but think how this kind of at-your-fingertips guide would have simplified my food allergy parenting journey. It would have helped me avoid blunders — because you don’t know what you don’t know — that could have cost my son his life. We were lucky, but ‘how-to’ guidance versus winging it much of the time would have been a gift.

Life is filled with ‘woulda, coulda, shoulda’s’ and you can’t rewrite the past. But you can surely write the future with more confidence when you have eyes wide open and a solid knowledge foundation to lean into.

The guide is broken down into four user-friendly chunks:

• Part 1: You Have an Allergy— Now What

• Part 2: Someone I Know Has an Allergy—How Can I Help

• Part 3: Together We've Got This

• Part 4: Resources and Tools

Part One: You Have an Allergy— Now What

Part 1 of the guide takes you from your diagnosis and understanding what it all means, to learning to avoid reactions and handling them when they happen. You will feel many emotions as you process the diagnosis, begin to accept it, and navigate your brave new world.

In this first part of the guide you will learn about:

• Allergens — both food and non-food reaction triggers.

• Cross-reactivity between pollens and certain foods (like fresh fruits) that can trigger [usually] mild symptoms (‘Pollen Food Allergy Syndrome’, aka ‘Oral Allergy Syndrome’.)

• How to avoid allergen exposures and subtle things to be aware of like cross-contact and surprising places allergens hide, like petfood and personal care products.

• Everything you need to know about anaphylaxis and how to handle a reaction.

• A summary of epinephrine options and common epinephrine myths to disregard.

• Why antihistamines won’t stop anaphylaxis.

• Practical ways to keep yourself safe when you dine out and travel.

Throughout, Allergy Advocates NY provides QR codes to helpful resources for additional guidance like the allergy and asthma-focused non-profits like FARE, FAACT, Allergy and Asthma Network, and Allergy and Asthma Foundation of America, plus trusted sources for news and developments like Allergic Living.

Part Two: Someone I Know Has an Allergy—How Can I Help

Allergic life can be isolating, especially as families try to find their way through ‘safe’, ‘not safe’, ‘safe enough’ choices. Some families choose to circle the wagons and opt-out of social opportunities because they're fearful they're unsafe. Others think more flexibly and devise workarounds to offset risks so they can stay in the mix socially. These are very personal decisions, each with their own challenges and consequences.

Allergy Advocates NY writes, “The awareness, support, and actions of family, friends, and the greater community can make a big difference in whether a person with allergies feels anxious and isolated, or safe and included.”

Part 2 of the guide helps grandparents, other family members, friends, teachers, coaches, and activity leaders understand how they can make a difference in the life of an allergic loved one:

• From understanding the allergies and how/when to use epinephrine,

• To rethinking food choices and how they prepare food...and much more.

This part of the guide also details ways eating establishments can help allergic people stay safe. When people with allergies don’t feel safe dining out, they miss out on opportunities to connect informally with others over a meal. When eateries get it right, they create loyal customers who will revisit, again and again. And allergic people rarely dine alone; they come with friends and family, boosting business for the restaurants that accommodate them safely and graciously.

Part 2 is easily shareable with family, friends, the broader community that interacts with your family, and go-to restaurants and cafes. Share it!

Part Three: Together We've Got This

Did you know that 20-25% of epinephrine administered in schools involves students not previously known to have allergies?

Part 3 of the guide focuses on how allergy safety can be optimized when it's shared between allergic individuals and their communities. Peace of mind, for everyone, comes from planning, training, and stocking epinephrine – not from just assuming there will never be a serious allergic emergency to handle.

Think of it as a two way street. Allergic individuals need to keep their epinephrine close by and know when and how to use it. And communities can provide a life saving safety net by stocking undesignated epinephrine in schools and public venues like parks and sports arenas, and training people on-site how and when to use it. Our hope is that more communities will prioritize equipping public venues with stock epinephrine to save lives.

Allergy Advocates NY underscores how important it is to stay informed about national and state laws making their way through the legislative process, as well as the rights and protections that already exist.

Each of us can advocate in ways big and small – like sharing our personal food allergy journeys with school and community decision-makers, as well as state and federal legislators. Each of us has the power to drive positive, long-term change for our food allergy community.

Part Four: Resources and Tools

Part 4 of the guide highlights resources to help you navigate allergic life with confidence. You'll find a QR code with links to:

• The key non-profits serving our food allergy community.

• Professional medical organizations specialized in allergy, asthma, and immunology.

• Allergy-focused media that covers research, legislative, and community news.

• The FDA.

• 504 Plan information....and more.

Plus, don’t miss the Sample Allergy Care Plan for handling an anaphylaxis emergency from FARE.

“Not another life lost to anaphylaxis - not another life lost to ANY life-threatening allergies!”

—Allergy Advocates NY

Thank you Allergy Advocates NY for allowing us to share this guide with the Allergy Force Community.

**The information in this guide is for educational and informational purposes only. It is intended to guide individuals in managing newly diagnosed allergies and to help inform family, friends, and communities about allergic life and how they can offer support. This guide reflects the most current information and protocols available at the time of publication.

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Based in Rochester, New York, Allergy Advocates NY’ s mission is to help inform, educate, and raise awareness of the public at large and at-risk individuals to allergies and anaphylaxis. They are dedicated to helping prevent anaphylaxis, offering community-based allergy training and education, organizing advocacy activities in Albany and beyond, and supporting the implementation of allergy-related legislation, NY state and federal, that becomes law.

They started in 2011, founded by Jon Terry and Toni Taylor as the Allergy Advocacy Association to honor the memory of Jon’s sister, Ruth Cornell. She died from anaphylaxis after being stung by a bee. A mom, wife, daughter, sister — Ruth didn’t even know she was allergic, a life tragically cut short too soon.

Allergy Advocates NY provides community-based training programs under ‘Epi Near You New York’. Epi Near You New York is a NY state-approved emergency allergy treatment training program offered for free to any businesses, schools, day cares, colleges, and anywhere people gather.

Learn more about Allergy Advocates NY’s work and join their mailing list.

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About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy app. She’s also an allergy parent. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. Her professional and personal experiences fuel her passion for creating tools for people with food allergies. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat

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Images: Allergy Advocates NY and Dylan Nolte on Unsplash