Are We the Minority? How do we effectively share information?

Are We the Minority? How do we effectively share information?

I had a conversation with my good friend, Kyle Dine, a month or so ago that has really haunted me. We were discussing all the recent lives lost because of anaphylactic reactions, and food allergies. As a parent, these deaths chill me, I know that one exposure- one incident that is mishandled- and I could be that grieving mother. It could be my son’s picture being shared as a cautionary tale. I think we share these stories and analyze what happened, what went wrong- in the hope that we don’t make these same mistakes. Kyle mentioned to me, asking the philosophical question- “Are WE the minority?”  Are we the 5% or 10% of the food allergy (afflicted or care-giver) community who actively seek information, and know about all those things we assume are fundamental management tools that EVERYONE has?

I live food allergies. My children both have multiple food allergies, it has become a part of every thing that we do. Every outing,  every meal, it was the purpose of this blog, and over these last 7 years, it has focused and  shaped me and my work. I read all the posts, articles, medical research I can get. I follow new apps, products and tools that aim to help people manage their allergies and medications. I share much of the information that I come across on Facebook, Twitter, or through other social media. I think in my doing this, I assume that everybody else is doing the same thing. That ALL parents who manage food allergies have the same knowledge and experience and tools that I am aware of.

Things like:

This all begs the question, HOW do we reach everyone else?  I wish I had the answer.

I wish that every allergist office had a ‘Disease Management Specialist’ who could take newly diagnosed patients and share with them tips, blogs, cookbooks, websites, organizations and safe food products to help them adjust to their new reality, and answer questions and help navigate managing allergies. 

How do we get accurate and up to date information about managing food allergies to the general public, to the general family practice and ER physicians, to schools, to nursing staff, to ambulance/EMT staff?  This was a driving force behind the concept of the Food Allergy Bloggers Conference: an annual event that could bring together experts who could share accurate up-to-date information to the bloggers who can then disperse this information to their own communities and followers. 

Getting food allergy education into mainstream media helps, however I don’t think it is quite as easy as “any publicity is good publicity”- it doesn’t help if we are coming across as crazy lunatics (as the Cup-Cake Wars liked to portray us as!) . Having well liked, well known figures speaking out gains empathy; yet having food allergies always portrayed as the butt of a joke does NOT help (thanks Hollywood- note sarcasm*). Imagine if Michelle Obama actually spoke out and discussed managing her daughter’s nut allergies, and carrying epinephrine? Or Steve Carrell, Ray Romano, Zooey Deschenal, Britney Spears, or any other public figure with a platform. Look at the positive responses given to celebrities like Jerome Bettis and Jo Frost. 

I think perhaps we ARE the minority among the 15 million people with food allergies. But we continue to raise our voices! What we CAN do, is continue to advocate, share information, and have those discussions with people in our communities. 

Our food allergy community has some beautifully articulate and kind writers, generous informed advocates, and deeply passionate leaders. I look at the progress and changes we have made even just in the past 5 years. We are making a difference. I look forward with hope to what 2015 has to bring.

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Kyle Dine, Ritesh Patel, Brynn Hadler, Cybele Pascal, Rebecca Sherrow, Cheryl Viirand, Tricia Gavankar, Sharon Wong, Lisa Musician, Caroline Moassessi, Jules Shepard, Myself (Jenny Sprague)

 

 

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5 Responses to Are We the Minority? How do we effectively share information?

  1. Beth Anne January 9, 2015 at 1:41 am #

    I think we are in the minority. I have several friends whose children have life threatening food allergies, and I’m always surprised at what they don’t know. Surprised that they take at face value the little information given to them at diagnosis and assume there is no more to know. But, that is why we all do what we do, right? To help, to offer information, community, recipes, and a virtual shoulder to cry on when that diagnosis is given, and the reality that life will never again look the same sets in. Together, with awesome people like you, Jenny, organizing events and rallying the community, we will educate the masses and make the world a safer place for our children.

  2. Jo-Ann January 9, 2015 at 8:46 am #

    I stood up and saluted as I read this. You do not have a little blog. You have changed the face of this community on the internet and I am honored to call you my friend. My experience with FA has been fractured since I have another with so many other issues not related to FA but your blog and local events put FA and their importance in my face.. I will forever remember our conversation at BlogHer 12?? and coming to the FAB conference. It changed my life for the better. Thank you for such an amazingly concise post that can be refereed to over and over.

  3. Heidi B. January 15, 2015 at 1:54 pm #

    I think it’s human nature. Some people want to know more, want to know EVERYTHING. And others, not so much. Love you Jen!

  4. Catherine March 20, 2015 at 7:52 pm #

    I am a multiple food allergy mom, and I definitely feel like I am in the minority. I cannot tell you how many times I have had to respond to comments like “well, he can eat (egg/milk/peanut/beef/etc.) if it is baked in something, right?” or the ever popular “he will grown out of it.” It is exhausting to constantly educate every single person I meet because rarely do people KNOW about food allergies. I came across your blog because I was looking for help with my son, who starts pre-k this fall, and his 504 plan. The school is being incredibly resistant to help. Even the system, with a ton of resources, doesn’t understand the severity of food allergies.

    Thank you for providing information. Thank you for being an advocate and giving me hope that things will be okay. Thank you for the guidance I have found through your blog. It is incredibly reassuring to find someone who does understand.

  5. Caroline February 12, 2017 at 6:17 pm #

    Looking back at this, sitting squarely in 2017, it feels like the progression is like swimming in pudding.

    One thing that I can’t shake is when you mentioned how to do we reach everyone else? This is the million dollar question. When we go on TV, write articles, speak out, etc., our audience is beyond our FA community, yet, if you read the comments, people complain back at us that this disease didn’t exist when they were kids, it is just fussy eaters or I often hear denial from allergic parents.

    I hear, “my kid is not that allergic” or “I don’t want to be compared to those crazy food allergy parents”, or my personal favorite is, “my child knows how to avoid his allergen, he doesn’t even like the taste of it” (uh, most reactions I have heard of are accidents).

    I think blogs like yours and FABLOGCON give ALL parents/patients the ability to learn in a very supportive and safe environment. I can’t thank you enough for what you have single handedly done to connect this community.

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