Working to Make the Unknown Known: Fallon Schultz and IAFFPE
As the mother of a child with Food Protein-Induced Enterocolitis Syndrome (FPIES), I truly understand the joys and immense challenges of raising a child with this rare and poorly understood condition. My baby is now 5 years old and attending kindergarten; he lives a full and happy life despite the hurdles that FPIES still presents.
FPIES can be a very frightening and confusing condition to deal with, especially prior to diagnosis, as a child can experience severe and unexplained reactions to common first foods and/or formula. is a serious non-IgE reaction in the gastrointestinal system. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are characterized by delayed, profuse vomiting, lethargy, diarrhea, and even shock. The most common triggers are milk and soy, but any food can cause an FPIES reaction. At this time, little is known about FPIES, and few doctors are able to recognize and diagnose the syndrome. Unlike common food allergies, standard skin and blood testing are routinely negative in FPIES patients. There is currently no cure or standardized treatment.
As Founder and Chair of the International Association for Food Protein Enterocolitis (), a nonprofit, volunteer-run organization for families raising children with FPIES, I want parents to know that they are not alone on this journey. I want them to know that there is a world of support and resources waiting for them. I also want them to know that we are working diligently on their behalf to educate physicians worldwide, to develop tools that will ease the day-to-day burdens parents face, and to fund research that will lead to better diagnosis and treatment options.
IAFFPE started in a hospital room in the hours and days following my son’s FPIES diagnosis. Like many other FPIES families, we had been through a long, worrisome struggle just to get a diagnosis. I was scared, concerned for my son and didn’t know where to turn. I was shocked to learn that there were no formal channels of support or information available to FPIES families. IAFFPE was launched in September 2011, and in a few short years, we have taken the lead on a number of initiatives that are bringing real, impactful change to the FPIES community. Here are a few recent highlights:
· Last June, we received news that FPIES finally has an : K52.21. This was a major initiative for IAFFPE, and when this code is enacted it will impact our knowledge, awareness, research, and funding for this condition.
· IAFFPE is the only organization actively funding FPIES research. In 2013, we funded a new CHOP that has helped shape our understanding of this condition.
· Last fall, we presented our first national FPIES Education Conference in Philadelphia. IAFFPE is planning more opportunities to bring our community together and offer access to leading FPIES experts.
· Our Medical Advisory Board has teamed up with other leading FPIES researchers to develop the first consensus guidelines for FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition.
Every day, we’re in touch with families who live with FPIES. They are resilient and resourceful; their courage and determination is a constant source of inspiration. But there is no denying that managing this condition can be difficult, demanding and isolating. FPIES adds an extra level of stress to our daily lives, from the financial burdens to meal preparation to the impact on social activities and relationships. It’s important to remind ourselves of the impact that this stress can have. We’ve shared on our blog some we often feel as parents of a child with FPIES.
I encourage families to reach out to us when they are getting started on their FPIES journey. IAFFPE exists to help families feel less alone and improve the quality of life for both parent and child. For those parents who have been in the trenches managing FPIES for a while, we welcome you to get involved and share what you know with others who are new to FPIES. For those who have time and talents to share, we encourage you to get involved in IAFFPE with volunteer or leadership opportunities.
Thanks to Ali @ bettertogether for this opportunity to share IAFFPE’s efforts and help raise FPIES awareness. I invite to you follow us on and and to learn more about FPIES and find out how you can help.
Click here to see a list of the other posts in this series.