New Growth and Leadership for IAFFPE’s Medical Advisory Board

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

The International Association for Food Protein Enterocolitis (IAFFPE) is proud to name a new chair and three additional members to our Medical Advisory Board (MAB), which is comprised of the world’s leading experts on Food Protein-Induced Enterocolitis Syndrome (FPIES).

Dr. Anna Nowak-Wegrzyn will take on the role of MAB Chair. She is currently an Associate Professor of Pediatric Allergy and Immunology at Mt. Sinai Medical Center in New York, NY. The position holds a three-year term in the organization that rotates within different institutions.

Dr. Nowak-Wegrzyn shares the organization’s global vision and has an innovative agenda for her term. She has already made significant contributions to our community through research and clinical practice, and we are very excited about the future of IAFFPE under her guidance.

We also thank outgoing Chair Dr. Jonathan Spergel for his remarkable leadership and dedication over the past three years; we are thrilled he will remain a key part of our Medical Advisory Board.

IAFFPE’s Medical Advisory Board is composed of allergists, immunologists, gastroenterologists and nutritionists who share a common purpose to create global collaboration for the diagnosis, treatment, management and advancement of FPIES. The MAB advises the organization on FPIES education, awareness and advocacy initiatives while also providing medical review of our web content and educational materials.

As part of our effort to advance awareness and understanding of FPIES at an international level, we’re also thrilled to announce three new MAB members:

  • Dr. Jin-Bok Hwang
    Department of Pediatrics, Keimyung University School of Medicine, Daegu, Korea
  • Dr. Antonella Muraro
    Pediatric Allergy, Paediatric Department of the University Hospital of Padua, Italy
  • Dr. Ichiro Nomura
    Department of Allergy and Immunology, National Research Center for Child Health and Development, Tokyo, Japan

These additional members reflect the global nature of our research and initiatives. We are privileged and excited to partner with such an accomplished group of physicians, researchers and thought leaders!

Towards a Better Understanding of Chronic FPIES

One of the greatest causes for confusion and frustration in the parent community surrounds the definition of chronic FPIES and whether it is representative of the condition. Whereas acute reactions are more commonly seen and documented in literature, we recognize and highlight the lack of literature representing chronic reactions; this contributes to the dismissal many families face from their physicians when describing symptoms.”

Chronic FPIES has been the subject of confusion and frustration for parents and physicians alike. Unlike acute FPIES, which typically presents with delayed, profuse vomiting, diarrhea, dehydration, and possible shock, the symptoms of chronic FPIES are often more “murky” and can be difficult to distinguish from other conditions.

“Chronic FPIES is an ill-defined condition characterized by intermittent vomiting, watery or mucous diarrhea, poor weight gain, and dehydration… In cases of ‘chronic’ FPIES, the differential diagnosis is even more difficult. The diagnostic boundaries, in particular with other non-IgE-mediated gastrointestinal food allergies are blurred, and it is difficult to differentiate this condition from them. This underlines the need for a precise definition.”

At IAFFPE we’ve been working diligently to make chronic symptoms part of the medical dialogue on FPIES. This blog post highlights some of our recent efforts and offers links to new medical literature that has broadened the discussion of chronic FPIES.

Efforts to Educate Physicians

  • FPIES Debunk the Myths PostcardThis past March, thousands of attendees at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI) received this attention-grabbing postcard. It is part of our effort to ensure that allergists, immunologists, and other healthcare professionals become familiar with chronic symptoms.
  • We recently developed a new resource for physicians: “Clinical Manifestations of FPIES: Acute and Chronic.” IAFFPE Medical Advisor Dr. Anna Nowak-Wegrzyn developed this piece to broaden the dialogue on FPIES. Physicians who attended AAAAI received this handout—please share it with your medical team as well!

Chronic FPIES in Recent Medical Literature
This month, a special edition of the medical journal Current Opinion in Allergy and Immunology focused on FPIES. Four of the articles included sections on the topic of chronic FPIES.

More Work to Be Done
IAFFPE’s task force is hard at work developing the first consensus guidelines for FPIES. Chronic FPIES will be included in the discussion, highlighting the importance of differentiating related symptoms from other conditions.

In addition, we will continue to leverage our partnerships with organizations such as AAAAI and the National Organization for Rare Disorders (NORD) to educate physicians and advance the discourse on this poorly understood aspect of FPIES.

Q&A with Dr. John James: An Allergist with Adult FPIES

Dr. John JamesIn honor of Food Allergy Awareness Week, we’re delighted to share a special Q&A with Dr. John James, an allergist who lives with food protein-induced enterocolitis syndrome (FPIES). Dr. James is a board certified allergist with Colorado Allergy and Asthma Centers in Fort Collins, Colorado. In addition to the diagnosis and management of allergic diseases and asthma, Dr. James has a special interest in food allergy, atopic dermatitis, and anaphylaxis.

While FPIES is widely considered to be a condition of childhood, it can occur in older children and adults. We thank Dr. James for sharing his unique perspective and answering our questions.

What has been your experience as an adult living with FPIES? I did not realize that I actually had FPIES until my mid-30’s. Beginning in college, I started to experience adverse reactions, mainly nausea, vomiting and diarrhea, after the ingestion of seafood. For many years, I thought my symptoms were the result of typical allergic reactions after eating certain seafood such as oysters, clams and scallops. I realized that I tolerated shrimp, crab and lobster, but anytime I would ingest clams, scallops and oysters, I would experience a delayed adverse reaction, typically 2-3 hours after eating these foods. I would just try my best to avoid these foods. I would have accidental ingestions at times and like clockwork, I would have a reaction. I never experienced any skin or respiratory symptoms and never anaphylactic reactions. There was no specific therapy for my symptoms other than letting the symptoms run their course. This would usually take a few hours. Now, I am just very careful not to ingest any mollusks like clams, oysters and scallops. I can ingest crustacean such as shrimp, crab and lobster without any adverse or allergic symptoms, and I have no other adverse reactions to foods.

You bring a different perspective because you are also an allergist. Could you talk more about that? During my fellowship in allergy and immunology, I became very familiar with classic FPIES in children, which is typically triggered by cow’s milk, soy and cereal grains. I encountered many pediatric patients with this disease and became very familiar with the diagnosis and treatment of this disease. This was thought to be a condition that only affected infants and young children. I do not remember encountering this condition in adults until I realized my symptoms were typical for this disease. I started to think about this disorder when I saw adult patients who were experiencing similar adverse reactions, typically to seafood. It became more and more apparent that FPIES could occur in adult patients.

It’s been suggested that the prevalence of adults living with FPIES may be higher than reported, as adults may simply avoid the offending food instead of pursuing a diagnosis. What are your thoughts? I think this is probably true, but there are no well controlled studies in adult patients with FPIES. I do believe it is more common than we have previously realized. Clinical investigations are needed in adults with FPIES to gain a better understanding of the actual incidence and prevalence of this disease in adult patients.

What advice would you have for other adults living with FPIES? Adults who are experiencing delayed and adverse gastrointestinal symptoms (i.e., nausea, vomiting, diarrhea and symptoms of dehydration) following the ingestion of foods, especially seafood, should discuss this with their healthcare provider. Many times, these symptoms are attributed to a gastroenteritis, food intolerance and/or food poisoning. A referral to an allergy specialist can be very helpful in making the diagnosis of FPIES and establishing a proper treatment plan. Specific food elimination is the most effective form of treatment; this usually involves the avoidance of only a few select foods. Systemic anaphylactic reactions are not typically observed with FPIES.

Why are you passionate about working with IAFFPE? Support groups such as IAFFPE can be extremely helpful for patients and their families in dealing with the many challenges that specific diseases present. Navigating through the vast amount of clinical and scientific information can be overwhelming. IAFFPE provides a wealth of information from patients, families and healthcare providers to make this process a much more rewarding experience. Learning from each other makes a huge difference in the successful management of food protein-induced enterocolitis syndrome.

Any words of encouragement for families of young children who have FPIES? I would strongly encourage these families to work with their healthcare providers and an allergy specialist to establish the diagnosis of FPIES and to develop the most effective treatment strategy. Keep pursing this issue until all of your concerns are fully addressed and an adequate treatment plan implemented. Fortunately, some infants and young children do outgrow their reactions and are ultimately able to ingest the foods that previously caused their reactions.

 

Four Things to Know About IAFFPE and the FPIES Movement

IAFFPE Founder Fallon SchultzBy Fallon Schultz, Founder and Chair

As IAFFPE honors Food Allergy Awareness Week, we are so proud to work on behalf of those affected by FPIES. As the leading international foundation for FPIES, we are actively pursuing positive, substantive change to alter the course of FPIES, raise awareness, and best serve the needs of our community.

This update serves another important purpose. It lets you know that your donation to IAFFPE matters; it goes toward making a real, impactful difference in the world of FPIES, from funding research to spreading the word about FPIES through the most powerful national channels. We have embarked on a number of exciting projects; we encourage you to join us as together we launch a new era of FPIES. Here’s what you should know:

1.       Initiatives on the Front Lines
I want to start by highlighting three key initiatives that will have an immediate and lasting impact:

  • We are well into the process of developing consensus guideline for FPIES. Our Medical Advisory Board has partnered with the leading FPIES researchers in Australia, China, Israel, Japan, and Korea; collectively, this group has published much of the literature that is currently available on the subject of FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition. Just imagine the difference that can be made by having formal guidelines for the diagnosis, treatment, and management of FPIES!
  • As you may have heard, EVERY pediatrician in the U.S will soon receive an FPIES Fact Sheet developed by IAFFPE’s Medical Advisory Board (MAB) and distributed by the American Academy of Pediatrics Section on Allergy and Immunology. This is a monumental step in our ongoing effort to educate all frontline providers about FPIES and ultimately reduce the amount of time that patients go without diagnosis.
  • Over the past year, IAFFPE has also been working with the CDC’s National Center for Health Statistics to create a unique ICD-10-CM diagnosis code for FPIES. Any day now, we expect to receive exciting news approving this code. Requests for ICD-10 codes are not typically initiated by patient advocacy organizations, but in keeping with our progressive mission to create awareness of FPIES, IAFFPE has been at the forefront of this request. I can’t emphasize enough how important this will be for our community on so many levels: billing, insurance and medical records, disease management, treatment advances, research, national statistics, and the list goes on.

2. Research Holds the Answers
Research is the most valuable commodity available to the FPIES community, and IAFFPE is the only organization actively funding FPIES research. As more studies are conducted, more data can be collected, leading to improved methods of diagnosing and treating FPIES. It is our greatest hope that research will lead us to the discovery of the primary cause for FPIES, followed by a cure.

As part of our research efforts, our Medical Advisory Board has developed four surveys to measure global FPIES awareness among key medical professionals (pediatricians, allergists, GI, dietitians). The results will help us understand how to better educate physicians in the diagnosis and management of FPIES. This will also help identify our research priorities so that every dollar donated is spent wisely and in the best interest of FPIES families.

In addition, we are expanding our development efforts in 2013 to fund new research at major medical centers that will help to identify the root cause of FPIES while also advancing treatment options.

3. Key Partnerships

Did you know that IAFFPE is the official FPIES organization affiliated with the National Organization for Rare Disorders (NORD)? We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).

In fact, IAFFPE has a very exciting opportunity to be profiled in The Journal of Allergy and Clinical Immunology: In Practice, a journal targeting clinical practices. We’ll be featured in the July issue on Gastrointestinal Allergy, putting a spotlight on the work we do for FPIES patients and further raising awareness among medical professionals.

4. Your Donation Makes the Difference
IAFFPE exists to help FPIES patients and mobilize a national community that deserves recognition, support and answers. From our esteemed Medical Advisory Board to our dedicated team of parents, we are an organization of volunteers. IAFFPE does not receive any government funding. We rely on donations from the heart of our community–people like you–to accomplish these goals.

In addition to the efforts already cited, IAFFPE brings about enduring, profound change by:

  • Providing free support, information, and referral services to FPIES patients and families. In addition to our growing library of online resources, we respond to hundreds of emails and messages via social media so that patients and families know that they’re not alone.
  • Igniting awareness of FPIES nationally and internationally with media coverage from ABCNews, Good Morning America, and The Ricki Lake Show. Our successful campaigns for Rare Disease Day and Food Allergy Awareness Week have spread the word about FPIES while also reinforcing our emerging place in the rare disease and food allergy communities.
  • Organizing the first national FPIES Education Conference scheduled for October 20th in Philadelphia. This is a unique opportunity to bring our community together and hear from expert speakers on a wide spectrum of FPIES-related topics.

As I write this post, it becomes clear how interconnected each of these points are. Initiatives. Research. Partnerships. Your Generosity. They are all fueled by each other; they are all dependent on each other. And they are also what set IAFFPE apart.

This is an exciting time for the FPIES community, and we appreciate your enthusiasm and support in helping IAFFPE make the world a safer, happier place for those living with FPIES.

2013: The Year That FPIES Becomes Visible!

IAFFPE Initiatives

At IAFFPE, we’ve been working hard behind the scenes to make FPIES more widely known in the medical community, to help ensure that no child suffers from a delayed diagnosis. To that end, we’re excited to highlight two important new initiatives for 2013!

First, our Medical Advisory Board has drafted an FPIES Fact Sheet that will be distributed to EVERY pediatrician in the U.S. by the American Academy of Pediatrics Section on Allergy and Immunology. IAFFPE’s Dr. Scott Sicherer is leading this effort to help educate frontline providers about FPIES and ultimately reduce the amount of time that patients go without diagnosis.

For our next big initiative, IAFFPE’s Medical Advisory Board has developed four surveys aimed at measuring global FPIES awareness among medical professionals. The surveys will poll four key groups (pediatricians, allergists, GI, dietitians) on their general knowledge of FPIES and how to diagnose and treat the condition. The results will help us understand how to better educate physicians in the diagnosis and management of FPIES. This will also help us identify our research priorities so that every dollar donated is spent wisely and in the best interest of FPIES families.

These are just a few of the substantive steps IAFFPE is taking to advance the cause. We couldn’t do it without the dedication of our Medical Advisory Board and the daily inspiration we get from our resilient FPIES community.