In this guest post to mark National FPIES Awareness Day, Christine Hayes Quigley shares her family’s special journey to thank those who helped make this day possible.
One year after Senate Resolution 129 passed, declaring May 4 as National FPIES Awareness Day, our family had the opportunity to visit the office of Senator Booker (D-NJ) in Washington, D.C. and thank his staff in person on behalf of the entire FPIES community. It was an honor to meet the team that listened to our stories, believed in our cause and served as our champions.
During that meeting, we were able to share our family’s journey and explain why a national day of awareness was so important to us as well as to thousands of other FPIES families across the U.S. We also learned how supportive Senator Booker is of food allergy initiatives and how willing he and his team are to meet with their constituents and be their voice on the Hill. We are grateful to Senator Booker for championing this cause and helping to make FPIES more visible.
National FPIES Awareness Day on May 4 has special significance for our family this year as our son is outgrowing FPIES and is finally living a more normal life.
As the parent of a child who has come out the other side of this condition, it’s hard to look back on the dark days early in our FPIES journey when we struggled to find a diagnosis for our infant son who was struggling to grow and living in tremendous pain. It’s traumatic to relive the two years of his life when he was unable to eat any solid foods, lacked basic feeding skills, and survived solely on medical formula.
As we explained to Senator Booker’s team, it’s important that our family never forget what our son endured and stay connected to the FPIES community. With invaluable assistance from Ian Hunter (formerly of the National Patient Advocacy Foundation), I helped lead the effort with the International FPIES Association (I-FPIES) to lobby for a National Awareness Day because our family knows the struggles that FPIES families face. We will continue to advocate for increased awareness and improved diagnosis and treatment because we know other families just starting their FPIES journeys desperately need it.
At the time of our son Connor’s diagnosis four years ago, the condition was somewhat invisible, even within the medical community. A National FPIES Awareness Day truly matters because the lack of awareness is the one aspect of FPIES that is 100% curable. While there is more information available today, we have a long way to go before every pediatrician is able to quickly identify and refer FPIES cases. Awareness is just the beginning and leads to quigley1action in the form of research funding and real diagnostic testing and treatment protocols for FPIES.
May is also Food Allergy Action Month. On May 4, National FPIES Awareness Day paves the way for our community to unite and bring this disease to the forefront, alongside IgE food allergies. Thanks to the support of Senators Cory Booker (D-NJ) and Patrick Toomey (R-PA), who led a bi-partisan effort to introduce and pass Senate Resolution 129 in March 2015, the FPIES community can leverage this day to bring about lasting, impactful change for FPIES patients and families.
What will you do for National FPIES Awareness Day? I hope you’ll take a few moments to reflect on your own journey and to educate those not affected by FPIES.