I sat nervously at the conference table, introducing myself to a room of new faces, new faces that I sincerely hoped would help to make accommodations for my daughter when she entered kindergarten in the next year. I had reason to be nervous—we had never found a preschool willing to Read more…
Do you ever wish you had more opportunities for raising awareness about FPIES? Are you ever unsure of where to get started with raising awareness? The last day of February each year is “Rare Diseases Day;” this awareness day sponsored by NORD (the National Organization for Rare Disorders) is a Read more…
Rare in How We Care The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each 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…
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…
We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether Read more…
Before I had my two children, I was never much of a kitchen gadgets or appliances person. Most of what I needed to do in the kitchen, I could do by hand, and I didn’t want to pay for them, didn’t want to clean them, and I didn’t want to Read more…
A diagnosis of FPIES can be life-altering. So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible. With over 150 million readers and thousands of contributors, Read more…
I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had Read more…