In 2019, I was fortunate enough to represent The FPIES Foundation at the ACAAI conference in Houston, Texas! It was an amazing opportunity to educate medical professionals who were unfamiliar with FPIES, as well as to meet FPIES-familiar practitioners and hear about their incredibly strong advocacy for our FPIES community. In addition, I was so grateful for the unexpected opportunity to meet and chat with individuals living with FPIES– adults with FPIES. Though FPIES certainly has commonalities across all affected populations and ages, each individual age group has unique needs. As I was hearing their incredible stories, these individuals really reminded me how essential it truly is that these needs be addressed through customized resources, advocacy, and support.
For the last ten years, we have been working each and every day to bring the FPIES community tools for advocacy, education and support. We have seen a steady change—more practitioners are becoming familiar with FPIES, more affected families are finding ways to reach out to other families like theirs, and more scholarly journal articles about FPIES are being published! We have also seen a need for resources spanning a wider range of age groups, most notably as of late, adult individuals diagnosed with FPIES.
This past fall in honor of Global FPIES Day, we proudly introduced a new section on our website, devoted to adult specific FPIES resources. New tools specifically tailored to unique management needs of adults, with resources on self-care, explaining FPIES to an employer or a professor, emergency management, and even a specific “About FPIES” document for adults. You can also access scholarly journal articles about Adult FPIES; these are great to take with you to medical appointments, or to simply stash in your emergency bag. More resources are in the works, and we hope you will keep checking back with us in the months ahead!
As our resources continue to grow, it is our hope that you, the FPIES community, will continue to reach out and share your experiences with us. Your voices– just like those of the individuals I met in Houston! — help us to create resources that can truly meet the unique needs of the various groups affected by FPIES, hopefully helping to facilitate better daily management for our community as a whole. As George Eliot so insightfully stated, “What Do We Live For, If It Is Not To Make Life Less Difficult For Each Other?” Thank you to all of you who have inspired our work and thank you to those adults affected by FPIES who have inspired our latest resources. Your voices and experiences continue to help make the paths of others a bit easier to navigate.
This post was written by Amanda LeFew, Co-Founder/Co-Director of The FPIES Foundation.