I’ve always been a firm believer that everything happens for a reason. However, when my then 1-year-old son, Reid, was diagnosed with a peanut allergy in March 2013, the reason certainly wasn’t apparent. My perfect little baby was no longer “perfect.” He had a flaw that was invisible to others, and the very lack of perceptibility of his allergy would prove to be our biggest challenge. The defining impact of allergies, as I have since ascertained, is the emotional toll they can take.
After the diagnosis, I immediately went into survival mode experiencing the typical stages of grief: denial, anger, bargaining, depression and, finally, acceptance. In the scheme of things, our family adapted relatively swiftly to auto-injector toting, label reading and bringing our dessert to birthday parties. Still, above all else, we were determined to keep our day-to-day routine as normal as possible, minus peanuts.
“Thanks, Mommy!” Reid cheerfully exclaimed on his third birthday. I figured he was grateful for his celebratory breakfast of allergy-safe mini pancakes with whipped cream and sprinkles. “Thanks for helping me with my peanuts,” he said.
Adding Crohn’s to Our Concerns
My heart filled with joy – and relief. This somehow affirmed that I was doing a good job of educating him. It was a big leap forward from his recent request to “eat peanuts for dinner.” My regular lessons with him about his allergy, in preparation for preschool, seemed to have clicked, and we were on the right path of reaction prevention.
The validation couldn’t have occurred at a better time for our family, because only months earlier the bottom had dropped out. Reid’s older brother, Jackson, had suddenly become very sick and we soon learned that he had Crohn’s disease with inflammation throughout his digestive tract. I was devastated; my husband was devastated.
A food allergy felt like a peanut-free cakewalk by comparison. It carries significant risks, of course, but those risks can be managed without daily drugs like those for moderate to severe Crohn’s, which list cancer as a potential side effect. Dietary changes alone weren’t going to be enough to put Jackson’s disease into remission.
With these two diseases hovering in our midst, I reached a crossroads. I dove headfirst into scientific research to uncover clues regarding the whats and whys of food allergies, Crohn’s and their points of intersection. Recognizing that a lot of misinformation and fear mongering exist online, I traded Dr. Google for every relevant peer-reviewed study to which I could gain access.
Knowledge empowered me! My new focus -in life, really – was to undo what had been done to my sons. I was on a mission to free them from their respective conditions and, through the process, hoped to help others in similar situations.
Mom on a Mission to Help
Keeping this goal in mind, I took to my mobile phone one fine afternoon in January 2015, and on a whim, founded a closed group on Facebook called Food Allergy Treatment Talk. (Admittedly, I was drawn to the name because the acronym FATT is fun and quirky.) I invited a gaggle of fellow food allergy moms, several of whom promptly messaged me to ask what the heck I was doing.
To be honest, I wasn’t sure. So the page sat untouched for days until I worked up the nerve to mention its existence on a large online food allergy forum. Membership quickly grew. I had identified the need for a social media space where people could openly discuss existing and emerging food allergy treatments in a balanced manner to make informed decisions for their families. FATT has become that place.
There are numerous benefits to leading a food allergy group, from personal connections to professional enrichment. The best part, in my opinion, is that it drives me to stay current on the latest and most-promising research, which frequently renews my optimism.
While immunotherapy is thrillingly the hottest buzzword of the moment across various disciplines, I’m equally encouraged by advances involving the microbiome, nanoparticles and traditional Chinese medicine. My worlds collided when I heard that DBV Technologies (makers of the Viaskin Peanut patch) was developing a Crohn’s patch! The commonalities between allergies and Crohn’s, primarily due to ties to the immune system, are more evident today than ever before.
I’m increasingly certain that investigating and sharing such research is my calling in life, and a reason why my sons were afflicted with these imperfections – their lightning bolts to my thunder. Together, we are weathering the storm. Despite occasional overcast days, the dark clouds are fewer and farther between. I’m a food allergy advocate; I’m a Crohn’s advocate. Most importantly, though, I’m a mom.
Stacey Sturner is the founder of the Facebook group Food Allergy Treatment Talk (FATT).