Monday, April 20, 2015

A conversation with Prof. Stefano Miceli Sopo on the importance of a Global FPIES Patient Registry

Prof. Stefano Miceli Sopo works out of the Department of Pediatrics at Catholic University of the Sacred Heart in Rome, Italy. He has co-authored several studies on Food Protein Induced Enterocolitis Syndrome including:

Prof. Stefano Miceli Sopo and his colleagues are passionate about FPIES research and the need for a Global FPIES Patient Registry. We recently had the opportunity to speak with Prof. Miceli Sopo who works with a center in Rome that follows and studies FPIES children.
Prof. Miceli Sopo says the most surprising thing for him is that there is still very little research being done on FPIES.  He says even most of the studies that are being done seem to offer only descriptions of case studies and maybe some guidelines.  He says, "We read little about the search for new treatments, to better understand its pathogenesis."  

Prof. Miceli Sopo says one of the most interesting recent aspects of FPIES research has to do with the promising effects of Ondansetron, during the acute phase of FPIES.  Ondansetron is an anti-vomiting medication, typically used to help chemotherapy patients.  He says in twenty of his case studies Ondansetron was administered and seemed to work well.

Prof. Miceli Sopo has made it a goal to create an FPIES registry in Italy and says there is a great need for a Global Registry, like the FPIES Foundation Global Registry.  He says, "It would be a really good thing" to have a central platform that was functional and affordable to provide information to pediatric allergy centers around the world.  He says a global registry would help doctors get on the same page when it comes to diagnosing FPIES.  Prof. Miceli Sopo says, "I believe there may be some differences.  We believe that we need a greater unanimity of behaviors.  The registry will serve to highlight the differences; we will try to eliminate them."

Prof. Miceli Sopo says hopefully a registry can also shed some light of what appears to be a spectrum of FPIES patients who suffer from varying degrees of the condition.  He says, "Just through the registry maybe we can see if there is a phenotype that tolerates small amounts of food, maybe processed in some way, and those who vomit after eating only a few milligrams of the food culprit."

Research of course takes time so Prof. Miceli Sopo says until we have more answers patients should keep an open dialogue with their doctors.  He says if there is any suspicion of FPIES he suggests eliminating the food, even if the suspicion is weak, and to carry out an Oral Food Challenge soon as possible.  Prof. Miceli Sopo says, "We have heard stories of children, who had 6-8 acute episodes before arriving at the diagnosis, it does not seem right."

If you interested in learning more about the Italian FPIES registry write to stefano.micelisopo@gmail.com

To join the FPIES Foundation Global Patient Registry follow this link.  If you've already joined you can instantly see survey and data results by clicking “View Data” here




This interview conducted and article written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.



Wednesday, April 15, 2015

200 Free Custom Wristband Contest!




Raise Awareness to FPIES with custom wristbands! With food allergy and FPIES allergy education and awareness days approaching, wristbands can be a great way to wear your awareness.

We have teamed up with WristbandBros.com to give one lucky family living with FPIES a chance to win 200 free wristbands and a free design consultation! Simply follow this link for all the details from Sean Mulligan of Wristband Bros.: 200 Free Custom Wristband Contest!

Wednesday, March 18, 2015

A Rare Disease Day Challenge for FPIES

This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES.  We, at the Foundation, found the event very encouraging and asked them to share their story...


Chase's FPIES Challenge started out as a way for me to help my friends and family understand what living with FPIES is all about.   Chase is 3 and by now they have all heard about Chase's 'crazy food allergies,' and some of them even know the lingo, asking about passes, fails, challenges and triggers.  A few may even know what FPIES stands for.  But hearing about it and living it are two very different things.

I challenged them to cook just one meal in the month of February (leading up to Rare Disease Day) that would be safe for Chase to eat.   Chase currently has about 25 safe foods.  I provided clear instructions, and an ingredient list.  I indicated where an ingredient was brand specific or needed to be organic.  I made sure they knew that 'processed in a facility where soy is processed' was a no-go and then I wished them good luck.

Then the questions started coming in.   Can I use pepper?  No.  Can I use spices?  Sea salt only.   Can I use chicken broth.  No!

Then the recipes started coming in.  I was blown away.   My fellow FPIES and food allergy families got it right away.   It warmed my heart that they tried to prepare meals that would be safe for our kids to eat together.  If we could magically erase the miles between us I'm sure we would have!   I was amazed by the culinary skills I never knew some people had and inspired to try some of these creations in my own kitchen.   It brought tears to my eyes when one friend had her 7-year old daughter help her make a kid-inspired safe meal, complete with a handmade menu.


Then one friend really hit home with me, a friend I haven't seen in 13 years! She told me her first attempt at apple blueberry muffins was a disaster.  She admitted she was about to just give up and skip the challenge.  Then she thought of us and thought of Chase and realized that's a luxury we don't have.  She tried again and made some amazing looking muffins.

I can't order pizza because I had a long day at work or rely on a frozen lasagna because I didn't have time to go grocery shopping.   FPIES is our life, at least for the foreseeable future.   We embrace it,  we manage it. We put on a happy face and positive attitude and thank God every day for two healthy boys and the progress Chase continues to make.   But at the end of the day it is exhausting both mentally and physically and there is no room for error.


I truly want to thank everyone who took Chase's FPIES Challenge or even those who just followed along.  FPIES can be isolating but I believe the burden is on those of us living with it to raise awareness.   Truly,  we are not alone!


This article was written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.