International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome (FPIES) were published recently in the Journal of Allergy and Clinical Immunology.
I have summarized the paper and highlighted the most important points in this blog.
As much as this paper was a mammoth task led by Anna Nowak-Wegrzyn and Matt Greenhawt, the driving force behind them was a mother, who “just wanted the best for her son”. I am sure many of the co-authors will have interesting anecdotes of how and where they met Fallon – I for one was “recruited” as part of the iFPIES team, while sneaking (dripping wet) late into a session on FPIES at the American Academy of Allergy, Asthma and Immunology annual meeting in Orlando 2008.
Matt Greenhawt, Fallon Schultz, Anna Nowak, Alessandro Fiocchi
In Fallon’s words….
“The International Consensus Guidelines were truly born out of both passion and frustration. Passion to create change and eliminate the burdens faced by those affected, and frustration for the lack of clear direction and management of the disease. When my son was diagnosed six years ago, there was absolutely no information available on FPIES and this had serious implication on his quality of life and medical stability. I had to figure out how to keep him healthy, how to get him through traumatic and terrible reactions and how to feed him. I was a mother, who couldn’t feed my son. His story echoed the many families I found online, all of whom were managing FPIES on their own.
It was my dream to formalize an effective and applicable plan for every patient affected so that my son’s story was no longer the norm. One that would reflect the realities of FPIES and that would validate the symptoms and presentations us families all came to identify and know. When I approached the IFPIES Medical Advisory Board to take on this robust and difficult project, I knew it would take a great deal of time, patience and diligence. We were up against very little information and support in the medical community and often times, disbelief about the validity of this disorder. I felt a strong sense of responsibility to urgently advocate for our community and to ensure that future patients and families would never experience what those of us in the dark ages did. Each contributor was hand-selected for their expertise and more importantly, for their passion to create better pathways for their patients. They are a sincere, vocal and authentic group, all displaying compassion and empathy for their patients and practice. I was touched by the heartfelt passion and mutual respect that these providers exhibited in each and every one of our meetings. I learned that it was not only the patients who were struggling with this bizarre food allergy, but the providers who were in the trenches, looking for answers and support for their patients. We learned from one another. It was a beautiful, collective, multi-cultural experience. In discussing the presentation in each cohort, we got clues about FPIES, we learned about different phenotypes and we took this information to create a 97 page document, marked forever in history as a jumping point for all those who have suffered the FPIES mystery.
I feel very blessed to have been any part of this monumental experience, to leave behind a legacy for future patients and providers and to lay groundwork in this disease. It is my great hope that patients and providers, worldwide, will benefit from this document and that we can take a giant leap forward to ensure a better quality of life and improved outcomes for all effected. It has been my honor to serve the FPIES community and to support the exceptional providers throughout this project.”