Sunday, November 24, 2013

FPIES: A Diagnosis, not a Definition

FPIES: A Diagnosis, not a Definition
Nichole L. Huff, Ph.D., CFLE

As Thanksgiving Day draws near, Facebook and other social media outlets are abuzz with people sharing blessings in their lives.  For things both big and small, people are talking about thankfulness.  For parents of children with FPIES, however, the anticipation of Thanksgiving may conjure up more fear than gratitude.  The #1 worry?  Protecting your child from an endless array of food prepared with unknown ingredients.  (And subsequent fears, such as being around people who may not understand why they can’t give your child “just one bite” of pumpkin pie or green bean casserole.) 

Whether it’s Thanksgiving Day—or any other day of the year—for parents of children with FPIES, it’s hard to stop worrying.  Which is why it’s all the more important that we, too, stop to regularly reflect on our blessings.

The Importance of Thankfulness

Research shows that being thankful is crucial for one’s mental health.  One study[1] examining how gratitude affects emotional well-being found that those who frequently “counted their blessings” were less likely to suffer from depression and were more likely to exercise, help others, and achieve personal goals.  The participants who regularly wrote down their blessings also exhibited more energy and were more optimistic than those who didn’t specifically reflect on being grateful.

This study is just one of many supporting the positive effects of thankfulness.  Because FPIES, however, defines so much of what we do each day, as an “FPIES parent” it can be difficult to remember that FPIES is a diagnosis, not a definition—for you or your child.  Depending on your child’s age, triggers, and stage of allergy management, it can be easy for you to count your blessings in “allergy speak” (e.g., successful food trials, severity of food fails, etc.).  But like other parents who manage a child’s around-the-clock condition, our constant focus on all-things-FPIES makes us more susceptible to conditions such as depression and anxiety.

Gratitude and FPIES

As an FPIES community, let’s use the upcoming Thanksgiving holiday to remind us to count our blessings.  Our non-FPIES-related blessings.  So I ask you, what are you thankful for today?  Big or small.  I’ll start…

Today I’m thankful for a quiet house and the warm sunlight shining on my face as I write this blog entry.  I’m thankful for the teachers who are caring for my kids while I work.  I’m thankful for my family’s sweet back-and-forth text messages now commenting on a recording of my four-year-old practicing “Jingle Bell Rock” for his upcoming holiday performance.  And I’m thankful for the earworm that’s now stuck in my head!  Because it reminds me of the little boy singing it—a little boy whom I love with every ounce of my being.

[1] Emmons, R. A., & McCullough, M. E. (2003). Counting blessings versus burdens: An experimental investigation of gratitude and subjective well-being in daily life. Journal of Personality and Social Psychology, 84(2), 377–389. doi: 10.1037/0022-3514.84.2.377

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at

Wednesday, November 20, 2013

Your voice: Be a part of the first FPIES Global Registry!

Your voice: Be a part of the first FPIES Global Registry! 
A message from Joy Meyer, Co-Director of The FPIES Foundation 

You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice.  I am the Co-Director of The FPIES Foundation.  I am one of the moms who founded this Foundation inspired from this incredible online community of families affected by FPIES. It didn't take long after I joined the online support groups (just weeks before my own son was diagnosed with FPIES, in the spring of 2010) for me to see the dire need for these voices to be heard, to be collected in a reliable, medically responsible ‘home’.   The voices offering resources, sharing tools, providing support, and empowerment to one another. And, most importantly, the voice of our children, and what having this allergy meant to their development, to their ‘relationship with food’, their quality of life living everyday with a rare and often misunderstood diagnosis.

Being in the medical field myself, I not only saw that the child’s voices needed to be heard but that the voices from ‘other side of the door’ as well; the voices of the very medical providers caring for our children.   To help their patients, practitioners want to provide the best care but not knowing enough about FPIES or where to turn to learn more about this little known allergy, can be as frustrating for a provider as the families living with it looking for answers to best treatments and management.   

We saw the necessity to build a strong foundation for these voices to be heard.  We knew we would not only need a non-profit foundation with a medical advisory board of health professionals compassionate and knowledgeable in FPIES to provide medical advisement, we would need the voices of the families to be strong, to be collaborative in the research and best practice guidelines of this often misunderstood diagnosis.   We recognize the importance of bringing awareness to the diagnosis while building a growing, solid, foundation of resources, tools and support for living with FPIES today; all while working towards the novel, and continued, research that we know this diagnosis that still perplexes many, needs.  

We also know that for recommendations to be built on evidence-based medicine (medicine that looks at several studies and repeated research before drawing conclusions for recommendations and protocols), it will be necessary for good quality research to be presented by several researchers of various facilities. This will help to assure that the widest range of symptoms are addressed and the best evidence-based recommendations can be developed for improved management of this allergic syndrome in the future.

From our inception, we established an ongoing relationship with REGID (Registry for Eosinophilic GastroIntestinal Disorders) to further educate ourselves on the requirements of a registry for FPIES.  Recently, through our Foundation Alliance with Global Genes, we have been introduced to the importance of our collective voices to the rare diseases community, globally, in the National Institutes of Health Global Rare Disease Registry.  We are excited to introduce FPIES to be among those collective voices for rare disorders. 

Your voice, the voice of your children and your family, will facilitate the evidence gathering that is a vital piece to research.  Several families have expressed my same thoughts over the years, “…if only a researcher could read some of what families share, and the patterns parents see on the support group pages…”  We have always recognized that a vital place for evidence gathering begins in the community, from the families living with this diagnosis.

So, how do we connect families with researchers?  How do we help providers help families?   How do we get the voices of all the various concerns, multiple symptoms, and daily struggles from the support groups to the researchers?   A patient registry! In partnership with Patient Crossroads CONNECT program, a program from the National Institutes of Health Global Rare Disease Registry we are honored to release our latest initiative: The FPIES Foundation Global Patient Registry.

I am just one voice in this community--- your collective voices ARE the Foundation. Each voice-- your voice!!-- is crucial for FPIES studies today, to guide new research for tomorrow. The symptoms and unanswered questions of our children's experiences with FPIES will be heard, recognized and researched further to develop protocols for future treatments and new developments in management and care of our children today. It all starts with ONE-- take a moment and add your child's voice.

Connect to FPIES Global Registry 
Registered families receive notifications when new surveys are posted. 

For more news on the FPIES Foundation Global Registry, see our press release: FPIES News & Events. 

The FPIES Global Patient Registry

  • This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
  • For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us:
This post was written by the Executive Board of The FPIES Foundation 

Tuesday, November 19, 2013

FPIES Awareness cards!

With the help of this caring community of families living with Food Protein Induced Enterocolitis Syndrome, we have developed a set of new awareness cards for families living with FPIES, inspired by families.

The business card-sized awareness cards are great for providing simple explanations of FPIES for friends, family, babysitters and so forth. Keep them in your wallet, car, or taped to the fridge to promote awareness and understanding where needed!

This postcard-size FPIES awareness card is great for keeping in the diaper bag or a purse. It not only provides information in plain language about FPIES and how to identify a reaction, but also gives tips on ways others can help to keep children affected by FPIES safe. This is great to share at playgroups, with family or with caregivers!

Along with these newly developed cards, we continue to have the FPIES Awareness rack card, a great at-a-glance explanation about FPIES.   These and more printer-friendly awareness materials are available for downloading and printing (or save the photo and share it in your social media- Facebook, Twitter, Pinterest and more!) from our Raise Awareness page of the website.

We welcome requests or materials via e-mail or postal mail.  Simply contact us at: and we will be happy to send you an awareness packet! 

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