{"id":752,"date":"2014-01-21T19:00:38","date_gmt":"2014-01-22T00:00:38","guid":{"rendered":"http:\/\/www.allergyhome.org\/blogger\/?p=752"},"modified":"2016-03-11T22:58:30","modified_gmt":"2016-03-12T03:58:30","slug":"not-your-typical-food-allergy-iaffpe-raises-fpies-awareness","status":"publish","type":"post","link":"https:\/\/www.allergyhome.org\/blogger\/not-your-typical-food-allergy-iaffpe-raises-fpies-awareness\/","title":{"rendered":"Not Your Typical Food Allergy: IAFFPE and FPIES"},"content":{"rendered":"

AllergyHome is honored to introduce the International Association for Food Protein Enterocolitis (IAFFPE) and Fallon Schultz. Fallon and IAFFPE have been integral in spreading FPIES awareness and supporting those who manage this condition. IAFFPE\u2019s advocacy and educational initiatives have led to impactful change and will continue to improve life for children with FPIES. Thank you Fallon for sharing with us.<\/em><\/p>\n

Written by Fallon Schultz<\/p>\n

\n

Imagine feeding your baby rice cereal (that classic first food) for the very first time. Fast forward two hours later to episodes of vomiting so severe that they leave your child pale, lethargic, and showing signs of shock. Your pediatrician suggests stomach flu, yet the scenario repeats itself with oats, this time landing your child in the ER. This is how the journey begins for many children suffering from Food Protein Induced Enterocolitis Syndrome (FPIES).<\/p>\n<\/blockquote>\n

What is FPIES?<\/h1>\n

FPIES<\/a> is a severe 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.<\/p>\n

Who am I?<\/h1>\n

I\u2019m writing today as the mother of a child living with FPIES. I\u2019m also the Founder and Chair of the International Association for Food Protein Enterocolitis<\/a> (IAFFPE), a 501(c)3 patient organization dedicated to improving the diagnosis, treatment and quality of life for those with FPIES through advocacy, education, support, and research.<\/p>\n

\"download\"<\/a>Who is IAFFPE?<\/h1>\n

IAFFPE started in a hospital room in the hours and days following my son\u2019s FPIES diagnosis. Like many other FPIES families, we had been through a long, confusing struggle just to get a diagnosis. I was scared, worried for my son and didn\u2019t know where to turn.\u00a0I was shocked to learn that there were no formal channels of support or information available to FPIES families. With support and guidance from the Children\u2019s Hospital of Philadelphia, our organization began in 2010 as the FPIES United Family Fund with the purpose of funding FPIES research and education. With early success came the need to establish a broader international foundation to unite the medical community and FPIES families; IAFFPE was officially launched in September 2011.<\/p>\n

What we (IAFFPE) do<\/h1>\n

In a few short years, our volunteer-run organization has taken the lead on a number of initiatives that are bringing real, impactful change to the FPIES community. Here are a few recent highlights:<\/p>\n