Anaphylaxis Aftermath—lemonade from lemons
By: Jenny Andjelkovic, FARE National Ambassador & Food Allergy Connecticut Co-chair
When you parent children with life threatening food allergies, fear is your constant companion. Fear:
That you won’t be there if they need you,
That you won’t recognize the signs of a reaction and connect the dots in time,
That you won’t do the right thing when it matters the very most,
That you can’t protect your child when they’re away from you,
That they could die if they take a bite of the wrong thing.
“When someone you love has a brush with death, your world is never the same.”
After such an experience, the important things in life —family and friends, health and well-being, shared time — stand out in stark relief from the chatter of every day.
When I almost lost my oldest daughter to an anaphylactic reaction because of a mistake that I made reading a food label, my fear escalated to an entirely new level. It was fueled by extreme guilt from dismissing that her sudden-onset illness could even be a severe allergic reaction, and nearly being too late to save her. The darkness of that fear — from seeing our family drama unfold — spread to my whole family, not just me.
Soon the fear turned into crippling anxiety, panic attacks and a year of anorexia for two of my food allergic children. My little foodies, who always ate everything, were suddenly so fearful of eating a nut, or not being able to breathe, they started refusing food. My daughter lost five pounds in two weeks and she was only six years old and growing! We were frozen in our fear. We had PTSD.
I gathered up even more worries over the next fear-filled, guilt-ridden years.
When my oldest was headed to kindergarten after her anaphylactic reaction, I learned that her bus driver was not required by law to carry epinephrine, or even trained in its use. I was outraged, panicked. I felt helpless.
I learned there are airline attendants who think a pecan is not a nut and would actually try to convince me it’s not.
I learned there are restaurant workers who don’t understand that they can’t use the same knife used in peanut butter to spread cream cheese on my child’s bagel, even after I explain the problem.
I learned a teacher would actually tell my second grader who was worried about eating a treat to, “Just take a little bite first and see if you feel anything.”
I learned that 9th graders could think it funny to throw peanut shells at my child in the school cafeteria.
I often felt that no one understood or believed the urgency.
“Fear and worry are a part of the journey, but they are not a part of the solution.”
My family found it helped to talk about this fear out loud and turn it into concrete operating rules and purpose. As a family we created our Family Rules for managing our family’s allergies. Having concrete, actionable rules in place helped reduce our family’s food allergy anxiety.
Purpose took a little more time to define. For me, it became taking action in my local community.
In 2010, a dear friend told me about a food allergy support group that met in a nearby community and hosted educational speakers. It was called the Food Allergy Initiative (FAI), run by Helen Jaffe along with some other dynamic food allergy moms. These moms were pioneers. They were taking a stand in a time when food allergies were just beginning to escalate, and research and awareness campaigns were few and far between. This group empowered me to make changes where I could, and to channel my energy into educating my local community (e.g., teachers, school nurses, bus drivers, other parents) with patience and understanding.
In 2012, the Food Allergy & Anaphylaxis Network (FAAN) and FAI merged to form a new organization called Food Allergy Research and Education (FARE). FARE sponsored an annual fundraising walk in Connecticut and I thought it would be a great way to get my children involved. I wanted us to feel empowered as a family.
I served as the CT FARE WALK Logistics Chair for several years, and my daughter applied for a kid’s service grant to create an entertainment section for the kids. We assembled a team of 30 from our town and had such a great time pulling it all together. Many of my friends who rallied to walk for the cause talked about their own food allergy missteps and anxieties. They talked about swinging between hyper-vigilance and not enough caution, or even denial at times, when dealing with their food allergic lives. It was such a release for us to vent and share in the safe space the event provided. It reminded us that we are not alone.
Through the CT FARE WALK team, bake sales and movie nights we contributed over $30K to FARE’s fundraising on behalf of my local food allergy community. Through volunteering and working to make a difference, my kids were empowered to take more responsibility for their allergies and become advocates in their school communities. My children learned a tremendous amount through these activities.
Recently my son’s nut allergic friend accidentally ate a granola bar that was unsafe in the school cafeteria. She was embarrassed and didn’t want to make a big deal of it. She asked if my son could secretly give her some Benadryl under the table from his backpack because she didn’t want to make a scene. He grabbed her hand and said, “Sure! Right after I walk you to the nurse’s office. The nurse can give it to you out of my back pack.” I was proud that he helped a friend in need, staying true to his own convictions. We were relieved that he knew just what to do in a food allergy emergency.
“Share your talents and passions to make a difference.”
There are many different ways to get involved in the food allergy community. Through volunteering, I realized how important support was for everyone touched by food allergies and wanted to be even more involved. The support group I attended needed new leadership, so I raised my hand. I also Co-Chair a FARE-recognized support group called
Food Allergy Connecticut with Jocelyn Walls. Our support group organizes casual coffees, one-on-one and group support, as well as educational speaker events and panel discussions with local immunologists, therapists, social workers and FARE representatives in Fairfield County. I served as Co-Chair for the first annual Connecticut Fall Luncheon to benefit FARE. As a family we have been involved in some highly rewarding food allergy policy-making work at the state and national level by calling, writing and visiting our Representatives in Hartford and Washington D.C. Currently I serve on the Board of National Ambassadors for FARE.
I am excited about the opportunity to contribute and drive positive change for the millions of people living with food allergies. The work I do for progress in the food allergy world is not selfless, though. Often the people who need us, whom we love more than life itself, drive us. I am just a parent trying to make the world safer for my children, dancing very delicately between teaching my children about all the risk that is out there, without instilling fear of exploring and fully living their lives.
Finding my purpose and working to make a difference has helped me take control of my fears, reduce anxiety for my whole family and make good things happen from near loss and tragedy. I've been able to make 'lemonade' from the 'lemons'.
Finding purpose and working to make a difference can help you take control of your fears.”
About the Author: Jenny (Wooton) Andjelkovic devotes her time to many causes close to her heart, but few as personal as her work in the food allergy space. All of her children have severe food allergies. Jenny works to raise awareness for food allergies through fundraisers, events and sharing her family’s story. She currently serves on the FARE (Food Allergy Research and Education) Board of National Ambassadors. Jenny also Co-Chairs Food Allergy Connecticut, a FARE-recognized support group that educates and connects Fairfield County food allergy families.