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.
- Coupons for zero co-pays and reimbursement if you get epinephrine with less than 12 months expiration dates?
- Familiarity with Top 8 free foods like Enjoy Life foods.
- To ALWAYS carry TWO epinephrine auto injectors, (In case one is mis-administered or doesn’t work- or if it takes rescue long to reach you!)
- To keep Epinephrine auto-injectors at the safe temperature (Not too hot or too cold!),
- To Request a 504 Plan at school, or that Most states if not all- have laws that say you CAN carry life saving meds- such as inhalers and epinephrine at school at all times- NOT to keep your only medicine “Locked in a filing cabinet in the nurses office.” HERE , or http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448405/, or http://www.aanma.org/advocacy/meds-at-school/
- That asthma increases risks for more severe reactions.
- To CALL 911 immediately if you use your epinephrine.
- To get to a hospital not because epinephrine is unsafe- but because you can be at risk for a biphasic reaction- (A secondary relapse reaction!)
- Check out AAFA’s anaphylaxis toolkit for more information on anaphylaxis!
- Did you know that blood testing is not the best way to diagnose food allergies?
- Do you know that after administering epinephrine it is best to have patient lay down with feet elevated?
- Benadryl is NOT recommended to treat allergic reactions! It will NOT stop anaphylaxis and can MASK symptoms!
- Or that you can claim a portion of your annual grocery spending when managing food allergies?
- Some other misinformation can be seen HERE – in an article with our friend and favorite myth-busting allergist, Dr. Dave Stukus.
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.