One question that keeps nagging quietly in my mind after last week’s First Annual Food Allergy Blogger’s Conference (FABLOGCON) is one that was posed by Dr. Mark Greenwald, co-creator of the Epi Center Medical Anaphlaxis Training Video during dinner one evening. He inquired if the our room full of food allergy parents, advocates and vendors were a good representation of our food allergy world. I said no. This crowd was very proactive and reaches deep for answers and a trip like this was in their budget. This crowd was very food allergy savvy. What keeps bugging me is how can we educate the other food allergy parents that don’t know what they don’t know!? We all have run into someone who does not carry two dose of life saving epinephrine auto-injectors, who eat foods labeled with a may contain label and does not notify their child’s school of a food allergy. How do we reach these folks? Our blogs and online community is an incredible support system, but how do sing to the choir and everyone else too?
Image courtesy of Africa via Freedigitalphotos.net
As a parent and food allergy advocate, I want to see each child and adult with any sort of life threatening allergy as safe as humanly possible. How we reach out to the other families, who are not online with us right now, reading, learning and sharing ideas?
image courtesy of Stuart Miles via Freedigitalphotos.net
Clearly, education is the answer, but how do we find the right path to educating everyone? I mentioned this in posts before about my children’s allergist, Dr. Joshua Jacobs and when my food allergy AHA moment came during meeting with other food allergy parents and the good doctor. He explained there was a learning curve and I was at the bottom and he could help with diagnosis but that the other women in that room, my new village, were going to teach me how to live well with food allergies. I learned from others-from their acts of food allergy education. They dropped off bags of safe foods, they taught me how to read labels, develop recipes and how to choose schools.
I don’t fully know what the solution is but what keeps nagging at me is that maybe if we — meaning those of us who are attending conferences, who are online searching for information, etc., do one tiny small act of food allergy education/kindness we might influence others? A simple grassroots wave of education kind of plan. I recently shared my free copy of Allergic Living magazine that I enjoyed in my #FABLOGCON Swag bag with a young college graduate working at new job, who was feeling a tad isolated. I watched today as she paid it forward and included food allergy accommodations on a flier for a local asthma camp she will be leading next month. She was making sure that all food allergic children would be welcomed and accommodated at camp! She was educating the public in a quiet way that food allergies matter by including allergen info on the flier.
Senator Debbie Smith at FABlogcon being honored for her work to keep food allergic children safe at school
Senator Debbie Smith commented last week during FABlogcon that Nevada Legislators were educated by the act of watching staff wipe down the hearing rooms, post signs and ask folks to not eat nuts in the hearing rooms while our food allergic children were present during the SB453 Stock epinephrine in schools legislative process. That small act spoke volumes.
Start a Food Allergy Education wave? What things have you done to help educate others?
p.s. The heart was made with Gimbal’s Jelly Beans—allergen free!
One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
Recently I attended a birthday party where one of the parents had a PA child. He told me that they always kept their epipens handy in the car! Not on them, but in the car, in the heat of Texas. The next shocker was that this parent was also a cardiologist. I’m disappointed in the lack of education out there some days, but am reminded by this post that even the small acts of education – the ripples – can turn into a much bigger wave. Thank you!
Heather! Yes, this is it! Maybe we all just share little things like your mention, about the heat, etc. Little bits of data daily could really make a difference. Have a great day and thanks for sharing.
Caroline… I love this question and is one ive wondered myself. Yes i know those parents you are speaking of my son’s school homes several of their children and i think it comes down to this, some parents want to be educated they just dont know where to start but there are also others that have told me the reason their child can eat CC foods and sit at tables while others are consuming their LTF Allergen is because we dont live in a PN free world. This remark distresses me im very aware of the world we live in which like others is the reason i educate myself constantly .. I put a 504 into place. I teach my child how to advocate for himself how to read labels etc. i would never ask my child to cross a busy road before i taught him how and felt he was mature enough to do so. Why would i throw him into the world without teaching him how to protect himself? I also think many parents who have actually witnessed their child have a severe reaction to their allergen may have grasped the reality of what can happen. We take it seriously! Our school district has approx 185 epi pens for k-12 apptox 100 of them are PN allergy we have managed to find about 8 families willing to work together to convince our district to make school
Safer… Our first school meeting is tomorrow one of the things we are requesting Education to all staff and food allergies and Anaphylaxis education as part of the health curriculum each year in grades 1-12 …. If we can not convince the parents of these other LTFA children to educate themselves then we will try to help educate the children. I fear for many of these children’s lives. I wish every parent took it as seriously as it really is!
Joy, That’s what I am talking about and I like your analogy of not crossing the busy road until your child knows how to. Doesn’t it break your heart when you think about how many epipens are at school and how many parents ask the teacher about parties, snacks,field trips, etc?
It’s scary. Every single year I speak to at least one parent who tells me that they don’t carry an epipen since their child’s allergy is not like my child’s. I then ask them how do they know that since there aren’t any tests to determine with 100% accuracy how severe a reaction might be.
Post back here about how your meeting went! Good luck.
I totally agree. A long time ago, I mentioned making cards with important points that I feel like I make, frequently, or points that I’d like to make to someone I don’t know very well. I finally did that when I made my new “business cards”. This is what is on the back:
http://i39.tinypic.com/2mdrlaa.jpg
Selena, you so brilliant! Must be why I adore you so! What a great idea.
I love that your dinner conversation with Dr. Greenwald resulted in this thought provoking article. I’ll send it to him to ensure he sees it. For me, the takeaway from this article is that most of the paying forward I do is with online with people who already well informed enough to be seeking this information. I will adjust my focus onto the streets and the day to day people I meet to make a difference in the real world too, like you did when you passed along your extra copy of Allergic Living magazine. Thank you for the inspiration, Caroline!
Elizabeth, you inspire me with how serious you take this disease and your passion to help others is incredible! It was great Dr. Mark conversation and that is exactly where change happens…with conversation! Please share with him!
I think that you have hit on a massive truth in our community: there are many people living with allergies that don’t know what they don’t know. Because they are unaware of where the holes in their knowledge lay, they do not seek the information needed to fill those holes. One of the biggest challenges I face both as an allergy educator and an allergy parent is determining the knowledge base of the people I am speaking with in order to offer them the knowledge they need for continued growth and awareness. Education is key. Seek always to grow your knowledge, as no one has ever regretted having too much knowledge.
Tanya,
Sooooooo well stated!!! I really am inspired by your approach of “sizing” up the people you are speaking to and then work up from there. I couldn’t agree with you more about no one ever regretting having too much knowledge. Your words came at the perfect moment! I’m meeting with my school district today at noon. This is exactly what I’m going to tell them and THANK YOU for giving me some strong and wonderful tips!