I had the honor and pleasure of attending a food allergy blogger conference at The Strand Hotel, in New York City this week. There is something truly magical getting to meet people you know virtually, through Twitter, Facebook, their articles, posts, books and blogs. We all came to this meeting with no idea who the other attendees would be, so we were excited and to be honest, quite star struck to be meeting some real Food Allergy Rock Stars! The guest list included: Cybele Pascal, Kelly Rudnicki, Heidi Bayer aka: Brooklyn Allergy Mom; Irene Chu & Sarah Chuck of Get Allergy Wise; Caroline Moassessi aka: Grateful Foodie; Elizabeth DiBurro aka: Easy Breezy Life; Joanne LaSpina aka: Food Allergy Assistant; Kim Pellicore The Food Allergy Mom; LibbyIlson The Allergic Kid; Lindsey Steffensen of Frugal Food Allergies; Lisa Rutter of No Nuts Mom Group; Missy Berggren aka: The Marketing Mama; Ruth LovettSmith of Best Allergy Sites, and Tracy Bush Nutrimom-Food Allergy Liaison.
This was put together by Lauren Kashtan of Mylan drug company, makers of Epipen; Sloane Miller, author of Allergic Girl, and Dr Ruchi Gupta, author of The Food Allergy Experience. I will be breaking my posts up into parts because there is a lot of information to share. Part 1 is about Sloane Miller’s presentation to us, my notes and interpretation of these.
PART 1 Presentation by Sloane Miller:
Epipen is celebrating its 25th anniversary and Sloane Miller shared that she is celebrating her 21st anniversary of carrying her Epipens! If have not read Sloane’s book Allergic Girl - I recommend you do. Even better, if you get a chance to hear her speak, do so! She is so inspiring, and has some very insightful advice for managing your life with food allergies. Her motto is “Just because you have a restricted diet, does not mean you have a restricted life.” She spoke to us about her advice she gives her clients about getting the information they need from their doctors. She explained that she has a 3 step approach. [As you will see, Sloane is fond of 3 step approaches!]
- Understand your food allergy diagnosis.
- Communicate your food allergy diagnosis
- Form positive and supportive relationships around your food allergy diagnosis.
Step 1- Understanding your diagnosis should start with your board certified Allergist diagnosing your allergies. When you meet with your allergist she recommends that you prepare beforehand. How? You may ask?! [3 steps of course!] Prepare, Consult, and Plan! Sloane said to first prepare on ONE page, your health history, including: known food allergy and atopic disease in the family [asthma/allergies/eczema]; any of your history of reactions; your date of birth and contact information. YOU are the best resource for information of testing done, reactions, and your medical history.
Secondly, prepare a list of your questions and concerns. For example: What tests will be performed, what will they show us, how accurate are they? What is my full & complete allergy list, what must I avoid, what things do I not need to avoid? How do I read a label and how should I interpret ”May contain” labels? Parents, remember these questions will change as your child grows, different ages and stages will each present unique circumstances and situations like dealing with their own mortality, bullying, kissing, dating, living on campus, etc. As your child ages, ask them to think about or write down their own questions. Lastly, What is your Food Allergy Anaphylaxis Action Plan? Avoidance is your first step, but you can not eliminate all risks. But by having a well understood plan of action for emergency situations, you can reduce the risks! You do not want to leave the appointment without fully understanding common signs and symptoms of a reaction and when would a reaction require using an Epipen? How will you prepare for a mild reaction? A severe reaction? By gaining a firm understanding of these facts, you will be able to clearly communicate this information to others.
Step 2. Communicate your food allergy diagnosis: You need to be able to explain the diagnosis and what you need from others to be and stay safe. ”This is REAL. This IS serious. and THIS is what I need.” Don’t be wishy-washy. There is a big difference between “I think/I guess” verses “I KNOW!”
- Be Clear. “I am anaphylactic to dairy, it could kill me. No milk, no butter, no cheese. No!- not even a little!” [Sometimes it feels like "Green Eggs and Ham" when Gramma is trying to push her homemade cooking at you! Not in a sauce, not in a roll, not in a cake, not in a cookie, not in soup, etc.]
- Be Factual. “Dairy will make me have an anaphylactic reaction.”
- Be FIRM! and WITHOUT APOLOGY! [example: "No I will not meet you at the sports bar. They have peanuts everywhere. We can go someplace else or you can go by yourself!"] Food allergies are an auto immune disease! No one ever apologizes for having cancer, so WHY do we always apologize for our allergies? Enough!
Finally, form positive and supportive relationships around your food allergy diagnosis. 1. Establish an inner circle of safe friends- the ones who never exclude, judge, or are afraid of your disease. The friends who will go the extra mile and accommodate keeping you safe because they love you! The ones who recognize your food allergy symptoms before you can sometimes! Because let’s be honest, if they are not willing to do this for you- then they certainly are not worthy of you. 2. Find your Food Allergy Allies- whether they are your teacher, school nurse, principal, boss, coworkers, team-mates, coaches, Girl Scout leaders. The people who look out for you and your safety like the restaurant chef who always goes over your meals with you to ensure they are made safely! 3. Find Support groups- both online communities and if you can, local groups. There is something inspiring and good for the soul when you can talk and get a hug of understanding and support from someone who “Gets it!”
I adored getting to meet Sloane, and found her to be an engaging, relatable speaker, who was insightful, knowledgeable, and inspiring! As a funny side note we were chatting over dinner and I mentioned to her that my cousin, an architectural engineer, lives nearby the hotel in New York City. Of course I called him to have him join us for a drink which was a fun surprise because Sloane had met my cousin and his wife a year ago at a quirky actors party, and they remembered each other!