Again, I’m a tad late posting here, but better late than never! At the Mylan Social Media Summit I recently attended, Sloane, author of Epi Pens®, was one of our featured speaker and truly a food allergy ambassador to all of us. We met her on our Monday night arrival during a group dinner that she organized at the Please Don’t Pass the Nuts with Sloane’sat helm of our incredible dinner. The meal was allergen specific in meeting the needs of our group and simply amazing! The next day, Sloane, a food allergy coach, advocate and consultant wowed us with her confident, no nonsense intellect and advise.
Meeting Sloane Miller at dinner
Her topic was Food Allergy Confidence, but I think the name of her discussion should have been the Secrets to a Great Life. First off, she carries her Allergic Girl in a small Please Don’t Pass the Nutsbag! For my 50th birthday I bought myself, oops, I meant to say, my husband bought me (wink, wink–I chose it, ordered and then tried to act surprised when I opened it) a fabulous red-orange Epi Pens® Bag. Sloane scored points right then and there! With a joyful, intelligent and energetic personality, she acknowledged that managing life threatening food allergies can be very overwhelming at times and then she gave us the secret!
Sloane’s secret to life seem to unfold into two simple words: breakdown everything! She approaches life with a specific formula. She explained her approach to life with food allergies: first, identify the issue–get and most importantly, understand the the diagnosis of your life threatening food allergies. Next, break down the components into parts and then tackle them one by one. Don’t try to swallow the whole deal in one gulp. She suggested approaching the diagnosis as such…..
- Identify. Identify the diagnosis of a life threatening food allergy. Sloane explained how the cornerstone of confidence in living with this disease to to fully understand what this all means and to build a trust relationship with your allergist. But…to better understand the diagnosis means preparing for your visit to the allergist (board certified) so you can walk away with the most information. She suggested you prepare by breaking down your appointment into three small bite sized pieces.
First, create a one page document of your health history that includes previous testing, illness, reactions, family history, rashes, etc. She reminded us that we are our best resource for our allergist and making that human connection with our medical professionals is simply gold. Second, create a one page list of questions for the allergist, such as, what tests are available, how to read test scores, how to address may contain labeling statements, what is an Emergency Action Plan, what is the difference between a mild and severe reaction, etc. Any question you have is valid, so ask it! On her website, Sloane, Sloane offers a downloadable list: AGR What to Ask Your Physician. Third, be prepared or prepare your child for the appointment. Discuss what are they feeling about the appointment, do they understand what anaphylaxis means. What do they know and are they afraid? Questions change at the different ages and stages and children need a direct line to the allergist and need to be able to speak directly to the allergist. For example, my teenage son needs to feel comfortable enough to discuss with his allergist, the risks involved with kissing and dating and how to manage this part of growing up. Incorporate the kind of language a child is able to understand and is most comfortable using. Also, this was incredibly key for me to hear, “have a conversation with your spouse/partner about you own separation from your children”. Allowing them to develop a relationship with their allergist and self management is crucial. Managing life threatening food allergies can create anxiety, so on her website she also offers tips on What to Ask your Therapist About Anxiety. As parents, we are conditioned to running the show and allowing and inviting your child into their care is vital to their future independence.
- Communicate. Confirm your diagnosis and then meet the world wearing your new food allergy shoes! Head out with your plan and two Allergic Girl in hand! Meaning your plan for avoidance and your plan to follow in case of a reaction. We can’t control all exposure or the eliminate the risk in the world, but we and reduce risk and be ready to respond. Sloane emphasized that no one should ever leave their allergist’s office without fully understanding their Emergency Action Plan and being able to explain that plan to everyone in their personal world (family, care givers, teachers, school, coaches, co-workers, friends, etc.). She shared her three simple steps for communication:
First, be clear while using simple understandable language. Write it out ahead of time if needed and rehearse it too if that makes you feel more comfortable.
Second, be factual, get your facts straight and know your needs. If you can’t attend baseball games due peanuts being tossed around, then be factual about sharing this information.
Third, be firm. Be unwavering, without question or apology. She reminded us that we have nothing to prove, life threatening food allergies are a serious medical condition. Period. Just communicate your direct needs. She gave an example of how she approaches dating: by simply explaining this is real, serious and she knows how to take care of it. She is very matter of fact. Sloane suggested practicing talking with others. Even if you feel silly, it is key to feel comfortable explaining your needs. Practice! Practice! Practice! I plan on doing this both of my children.
- Create Positive Experiences and Support. Talk to other families who are in your position. Determine who is in your inner food allergy circle; you know these folks, the ones who honor your needs, are flexible, supportive and kind to your food allergy challenges . For me, these are the folks that I know I can and do call to “talk me off the ledge” when something blows up or goes terribly wrong in my food allergy world. They are the ones who keep me sane when I feel insane and help me find the light at the end of the tunnel! Sloane suggested finding your Food Allergy Allies, such as teachers, chefs, co-workers and friends who understand and give you support. Lastly, she turned our attention to food allergy offline and online resources. Are there support groups in your area? If not, look online or consider starting a group! Even though I co-lead our local support group, I’m blessed with a lovely online community. I enjoy the balance of both–especially when I have food allergy friends in different time zones. So basically, 24/7 I can find someone in my food world online and ready to offer some advice or answer a question. I treasure these relationships as much as my incredible face to face food allergy peeps.
It was welcome news to hear that Sloane does Skype sessions with patients. I’m trying to brainstorm ways we could host a webinar or something along those lines. I confess to worrying that Sloane’s lecture would be the same stuff I had been hearing for years-wow, was I wrong! You can check out her website, Sloane’s and her blog too, Sloane™. I came home and told my son that Sloan is a master at dating with food allergies and he was all ears. I would love for him to have a discussion with someone, other than me, about dating who is rooted in common sense and who has such a beautiful strong sense of self. Her no apologizes approach really resonated with me. I ordered her book immediately, Allergic Girl, adventures of living well with food allegies and it is sitting on my Kindle waiting for me to snuggle up and start reading!
Again, as I mentioned last week in my blog about Valentine’s Day that included mention of this summit, the discussions were interactive. I have a feeling our conversations truly derailed her agenda, but what was very delightful, is that Sloane is a true professional and she made her points while also meeting the needs of 16 passionate food allergy moms. I hope to have the opportunity to interact with her again in the near future.
Thanks Sloane for being a valuable part of the Mylan Social Media Summit!