Make Like A Zebra and #ShowYourStripes Every year, my daughters and I look forward to Rare Diseases Day. It is such a great opportunity to raise awareness, but I feel like it also is a wonderful reminder to them that they are not alone– there are kids all over the Read more…
This gap between patients and clinicians was evident upon my son’s diagnosis, but was becoming more clear the more we learned about FPIES. Fortunately, the FPIES Foundation created the FPIES Global Patient Registry
As we celebrate our seventh anniversary at The FPIES Foundation, I have been looking back over the years since our beginnings and since the start of my own family’s FPIES journey. I smile as I remember families that have come and gone from our community. Even though they may have Read more…
Parental psychosocial distress: A needs assessment for parents of infants 0 to 1 year with food allergies and intolerances. A food allergy diagnosis can be a life-altering experience. The stress involved for the child and their parents has been underappreciated. We recently learned of a new research study examining parental Read more…
Before I had kids, I always assumed we’d be one of those families that were always on the go – playing at parks, exploring our neighborhood, doing fun outings like museums and the zoo. And then, you know, FPIES. Without getting into too much detail (let’s just say the words Read more…
Emergency bread. This may sound like a bizarre concept to families without allergies, and possibly even to those with. The first time I used the term, my husband* looked at me like I was crazy. “What’s emergency bread?” I explained what I meant by it, but it didn’t really Read more…
Paying Medical Bills as Simply as Possible By Margaret Hancock For those navigating FPIES – or any rare disease – hospital, specialist, nutritional, and additional medical bills can be quite confusing and time-consuming. I am grateful for a brief stint that I had with an insurance firm as I learned through Read more…
Winter can seem to drag on forever when your energetic little one can’t spend quite as much time running around outside. We’ve put together some ideas for indoor activities, as well as some tips on staying safe and healthy, to keep you and your children busy and happy until the Read more…
This post is inspired by an FPIES article appearing on The Mighty “What I’ve learned as a mother of a child with FPIES”. At the end of the article, the author mentions her ability to know the cross contamination of common grocery store items. When we shared this article from Read more…
Traveling to Walt Disney World with FPIES By: LL McKenzi Soon after packing up and moving our family south, life turned upside down as our infant son was diagnosed with Food Protein-Inducted Enterocolitis Syndrome (FPIES). We were one of the first families here in the upstate of South Carolina to Read more…