Global Day Impact in 2015

Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the healthcare providers who serve them.  

Together, we:

• Provided hope.  
• Illustrated what an acute FPIES reaction looks like, in the stages of dehydration and shock.  
• Increased awareness with an “Overview of FPIES” for families, pediatric professionals, caregivers, teachers, and our communities.  
• Explored ways to communicate with our children regarding special food needs and how we can Redefine Differences. 
• Discussed strategies to nourish children affected by FPIES and their families, utilizing tools for coping and managing the stress of living with FPIES.  
• Prepared families with checklists for school, travel, recipe building and more! 
• Empowered families in the kitchen to learn more about “Cooking with Food Allergies.” 
• Shared your “Voice of Education” in our “Global Day” social media album  
• Inspired more families to share their stories and their experiences with this life-altering diagnosis. 

We ended the month of awareness with being honored with one of the first Top-Rated Awards of 2015 from GreatNonprofits! We were so touched and appreciative to read all of your reviews!  The reviews by volunteers, families, supporters and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community, recognition we are so very honored to receive.**

**While the Top-Rated Awards ran through the end of October, The Foundation was part of the inaugural group to qualify for the year. In addition, we’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years. Look for this near the holidays.

Together, we were all the Voice in raising awareness, while fostering advocacy, education and support for FPIES this Global FPIES Day. Thank you for connecting with us, across barriers of land, ocean and language, in order to better the lives of those affected by FPIES, worldwide.

As we head into the Holiday season, it is our hope that awareness and education highlighted during Global Day can continue to start conversations, enable inclusion, and help keep our little ones safe and thriving through the challenges of this year and those to come. 

This post was written by the Executive Board of The FPIES Foundation 

FPIES Trends and Insights from the Patient Registry

FPIES Trends and Insights: 
Caregiver/Patient Reported Data from the Global Patient Registry 
By Hilary Lagerwey 

For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis.

First of all, we want to say a big thank you to those who have already filled out the survey with valuable information!  There are several good studies out there describing what FPIES looks like, and our goal is to supplement that research with up to date information gathered from an even larger pool of families that we are able to reach using this tool. We hope that this information proves immediately valuable to families and doctors who are managing this diagnosis on a daily basis. We also hope to provide some insights to researchers that might prompt further study.

Anyone who fills out the survey has access to all of the cumulative data so feel free to browse and analyze for yourself, but today, in honor of Global FPIES Day this month (Oct.14th!) we thought we would share some of the insights we’ve gleaned so far. We recognize that since we are collecting data by voluntary responses some of our information may look skewed as compared to a more random sample; however we know that these results are important to share and that they represent a significant portion of FPIES families.

If you haven’t filled out the survey yet, please do so! The more data we have the more we can learn. The more information we can give to doctors and researchers, the more we can advance research to benefit all families living with FPIES.  Here is a look at what our data says about some frequently asked questions:

Do FPIES symptoms typically appear with the introduction of solid foods and formula or is it possible to react through breast milk?

57.4% of survey respondents reported exclusive breastfeeding when symptoms began.

Is FPIES typically outgrown in early childhood?

Out of patients 3 or older in our survey data, 15.8% report outgrowing acute reactions. 1 patient reported is under 3 and reported already outgrowing acute reactions. Several patients well into their elementary school years state that they still have not outgrown acute reactions.

*Also out of patients 3 or older, 15.8% report outgrowing chronic reactions.

50% of those who report outgrowing acute reactions report still experiencing GI symptoms with previously reactive foods.

Do most kids only react to one or a few foods?

Out of those who report projectile vomiting with reactions, 51.9% stated this occurs with only 1 or 2 triggers vs. 48.1% who stated they experience projectile vomiting with more than 2 triggers.

26.9 report projectile vomiting with 5 or more triggers.

What symptoms are common with reactions?

81.3% report projectile vomiting

65.6% report diarrhea

48.4% report visible and/or occult blood with stool

Thank you to FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey for compiling this survey data. 

Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice