More Insights from the Global Patient Registry

More Insights from the Global Patient Registry

by Hilary Lagerwey 

Last year we shared some statistics gleaned from the data provided by FPIES families across the globe. The Global Patient Registry  is a platform to collect information such as medical history, family history, and specific symptoms. The purpose behind this data repository is to both help families glean some insights into this rare disease and also give researchers some direction so that the whole FPIES community can learn more. The information you all have already provided is invaluable and we are always looking for more people to take the surveys.

In our last report we examined what FPIES looks like so this year we decided to focus on medical and family history. Although no one knows exactly what causes FPIES, data such as this can possibly help further our collective understanding.

As you look through this data for yourself, it is important to note that these are informational survey’s and not collected in the same ways as other types of research such as a scientific study. The data comes from volunteer respondents and all of the information is patient/caregiver reported. Some families might be more likely than others to participate in the survey, and while this means the numbers here may skew towards the more severe and more protracted cases, we feel it is still important to give a voice to this group of FPIES patients. The more data we have the more we can learn and share with researchers. In sharing this information and analysis, our intent is not to present these statistics as conclusions, but as starting points for a discussion amongst the community. This article is just the beginning of these conversations!

When looking at statistics like this for a certain sub-population, in this case FPIES patients, it is most useful if you have a number to compare that to in the general population. For some of these numbers we do have a reasonable idea of how FPIES patients compare to the general population, and for some of these numbers we know less.

Again, keeping in mind that these are survey responses and not a specific scientific study, this information does not support the idea that birth circumstances (C-section births or prematurity) play a strong role in the development of FPIES. The percentages of C-section births and premature births are slightly lower for the FPIES population than the general U.S. population. (Note that this isn’t an examination of whether those numbers are statistically significantly lower, but they certainly aren’t dramatically higher.)

Looking at first degree relatives of FPIES patients (parents and siblings) can help get an idea of whether FPIES tends to cluster in families. Unfortunately at this time the prevalence of FPIES in the general population is not known so we have nothing to directly compare these numbers to, but as awareness spreads and research continues, perhaps we will soon know more about the overall prevalence. If we assume the population prevalence is less than 1 in 10 then this data might suggest a tendency for FPIES to cluster in families. The next question to ask would be does that clustering indicate a genetic component, or some sort of shared environmental factor such as the microbiome, or a combination of those factors?

These statistics that shows a seemingly high prevalence of GI disorders, metabolic disorders, and autoimmune disorders in the family history of FPIES patients, and especially the mothers, are perhaps the most interesting but also the least straightforward of this list. At first glance, this makes one question if there is some sort of genetic link here between GI disorders, metabolic disorders, and autoimmune disorders and FPIES. But we must also keep in mind that this is a pretty broad category of diseases so the number of cases you would expect in the general population is probably fairly high and also tricky to estimate for a number of reasons. 

It is also interesting that in our sample GI disorders, metabolic disorders, and autoimmune disorders seemed to disproportionately affect the mother. Does this suggest some sort of environmental factor in utero that contributes to FPIES? Or is this simply reflecting the fact that autoimmune diseases disproportionately affect women and the fact that women are more likely to go to the doctor and therefore more likely to be diagnosed with any condition? Or some combination of all of these things?

As you can see this data can be very useful and we as a community can help encourage more research so that we can all learn more. This data is very preliminary and these discussions are just the beginning. Please take the survey if you have not already so we can all continue to learn more!

This post is written by FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey.  Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice.

The House That Awareness Built

It was a beautiful afternoon and my girls were so excited-- the long-awaited baking had begun!  Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama.  My eldest tied on her apron, read the recipe, and started measuring. When I reached over to help, she turned to me and smiled sweetly, saying,“I can do it myself this time, mama. I'll be OK.”

As parents, we often find ourselves moving towards milestones--- waiting for that first smile, that first sweet sound of our babies' voices, that first wobbly step. The first tiny move towards independence! As parents of children diagnosed with FPIES, milestones often take on a different meaning. We learn to celebrate the “ordinary moments” as extraordinary milestones-- a first food after months of reactions, a new texture that is finally tolerated, that first shared family meal.

Five incredible years have passed since The FPIES Foundation incorporated. Five years of meeting new families, hearing of heartaches and victories, struggles and successes. Five years of meeting and partnering with compassionate and caring medical professionals, expanding medical education resources, and lighting the flame of awareness in places where FPIES was once unheard of. This has been a monumental five years, and what has made it so monumental has been sharing in this journey and these milestones together.

You were with us when we took our first step on August 31, 2011, launching The FPIES Foundation and debuting our website. You were with us, empowering other families day after day, year after year, to find their voices through our toolbox and resources. You were with us, advocating for other families as you shared your own families' inspiring stories. And you are with us today, ensuring The FPIES Foundation continues to be a home for resources, support, and advocacy. This is the house that awareness built, with an incredibly strong community at the core of its Foundation.

From our beginnings, we have dedicated ourselves to overcoming the challenges of FPIES by offering tools for education, support and advocacy to empower families and the medical community. In the ordinary, daily life with FPIES, we have found extraordinary connections. We look to the future as we continue to invest in education, awareness, research and support for all affected individuals, their families and the medical professionals that serve them. Together, we will continue to be the Voice for all those affected by FPIES worldwide; together, we will continue to take big steps for the smallest of patients. Thank you for helping us build the Foundation together--- yesterday, today and tomorrow!

Building FPIES Awareness through Fundraising and Events

Over the last year we have been inspired by the impact of your unique talents and hard work as you continue building awareness to FPIES.   As we approach our 2^nd annual Global Day, we wish to share some of these events with everyone, in hopes to inspire you, that you too can make a difference.  “Our shoes may be small but our steps will be BIG!”

FPIES families have always been creative, including in how they raise awareness and fund-raise! We have had several moms using  Jamberry fundraisers, and even a couple of these moms designed the nail wraps themselves to feature FPIES awareness art. Awareness from fingers to toes! Other moms have designed T-shirts and other awareness gear to raise funds to further FPIES education and awareness. Their creativity has helped fund programs to educate medical professionals about FPIES. We want to give special shout-outs to Jessie Ipson Richens, Kate Hutchens, Crystal Lentz, Brandi of Glam Tots, Rosie's Creations, and Half Pint Threads!

Restaurants have joined in the cause, sponsoring family nights and awareness days where they donate a certain percentage of sales to The FPIES Foundation. We were touched to see photos from Jersey Mike's Subs-- a visual reminder of how communities are really joining in the cause and reaching out to support  FPIES awareness. The families initiating these fundraisers and the restaurants partnering in the cause have helped to fund programs providing resources and support to families worldwide. Special recognition for Luca's family for all of their support!

In every fundraiser and in every awareness event, families put their own unique stamp on the day.  Just as each child is unique, each family-organized event has its own special style. The Fangman Family, for instance, raises awareness at Drag Races and Mud Runs!  Samantha Fangman shares, “Our daughter, Josie, has FPIES. My husband had decals made for his race-car with the FPIES logo. We have brochures printed that we hand out at all our races. We were amazed how many people came up and asked us what FPIES and The FPIES Foundation was at our first race. We’ve handed out many more brochures than we anticipated and are thrilled about it!!! We are doing what we can to get the word out!!“

If you are thinking about starting your own awareness event or fundraiser for the FPIES Foundation, we hope that you have found inspiration in the stories of the families highlighted above--- we certainly are inspired by all of them, and all of you, everyday as we continue working to fulfill the FPIES Foundation's mission of education, support and advocacy for all those affected by FPIES, worldwide. 

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

The FPIES Foundation Celebrates Anniversary

The FPIES Foundation Celebrates Anniversary with Huge Social Media Awareness Day

Allows families to Text-A-Wish to support Foundation’s Efforts

August 25, 2013 The FPIES Foundation is excited to celebrate its second anniversary of empowering, educating and helping families navigate Food Protein Induced Enterocolitis Syndrome, or FPIES. 

The Foundation is planning a week-long celebration leading up to August 31, 2013 honoring the medical professionals, volunteers, and most importantly, the families who help raise awareness.  These amazing, strong families live with this rare allergy every day and are the reason the FPIES Foundation exists.

The week launches Sunday, August 25^th, 2013 with an exciting social media campaign filled with inspiring stories and the latest FPIES information and awareness opportunities.

The week caps off with the most aggressive FPIES Foundation fundraiser to date.  On Friday, August 30^th we team up with the Wish Upon a Hero Foundation for a special social media awareness day.  FPIES Awareness will race across Facebook, Twitter and personal cell phones as people participate in our Text-to-Donate day.  Just text WISH on August 30^th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.

FPIES is a rare and often difficult diagnosis.  It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

The FPIES Foundation’s roots lie with families, started by moms who saw a vital need for information and resources.

Foundation Chair Joy Meyer says, “As we go into our 3^rd year I am even more inspired to be a member of this community.  Families and medical providers come together every day to help children living with FPIES thrive.  We have this great community to thank for these growing resources, building awareness and support.”

Highlights this year include:

• 501c3 Non-profit designation
• A newly expanded website with an extensive FPIES “toolbox” to help families check symptoms, journal foods, and prepare for doctor visits
• A provider directory filled with FPIES knowledgeable doctors and specialists
• Launching “FPIES, Now I Know” an awareness video inspired by real FPIES families
• “Awarenessis Action” campaign with brand-new resources families can print out to help educate medical professionals and raise awareness in their communities
• An expanding Medical Advisory Board dedicated to a multidisciplinary approach to FPIES
• The formation of a Volunteer Advisory Board made up of active members of the FPIES community
• Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog
• Awarded certification from HON (Health on the Net) Code, “the commitment to reliable health and medical information on the internet.”
• FPIESFoundation supported regional monthly gatherings, and tools to help families start their own FPIES Foundation meet-ups
• Participation in Feeding Tube Awareness Day, Rare Disease Day and Food Allergy Awareness Week

The work doesn’t stop here.  The FPIES Foundation is excited for the year ahead with plans to launch a first of its kind ‘For Kids’ page, including a Child Ambassador program where the focus is entirely on the child, and not only on the child’s FPIES.
We will continue partnering with organizations to increase awareness and education while lobbying to create standardized practices for FPIES diagnosis and treatment.

The FPIES Foundation is an Incorporated 501(c)(3)Non-Profit Foundation. It is a collaborative effort of several families affected by FPIES whose relentless journey has sparked the desire to help other families find their way. FPIES is often under recognized and poorly understood. The organization's founders identified a dire need for tangible support resources for both the affected families and the medical community. The FPIES Foundation is committed to providing a credible and interactive support resource for this rare, oftentimes isolating diagnosis. It strives to make the everyday lives of FPIES children and their families easier.

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