A guest post by Laura Benjamin, MD. No one expects to find themselves in the back of an ambulance with their six month old baby during a relaxing Florida vacation, but that’s exactly where I ended up. My husband and I, both doctors, and three other couples, all also doctors, Read more…
Rare in How We Care The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each Read more…
We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site. The Mighty is a story-based health community focused on improving the lives of people facing Read more…
Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact– medical and non-medical– this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family’s story may differ in Read more…
My daughter Nicole was diagnosed with FPIES when she was 4 years old. She had struggled with chronic issues since 18mths of age and we were more than thankful to have a diagnosis. Nicole has several safe foods, including Chicken, Eggs, EleCare Jr Vanilla, Apples, celery, zucchini, carrots and peas. Read more…
This post is to honor fathers of children living with FPIES by sharing these stories of the journey of their families. Sharing both trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well. We welcome this unique Read more…
She’s 9-years old. She loves the A-Team and Selena Gomez. And, she has FPIES. Meet Sarah from “Sarah’s FPIES Clubhouse.” We recently had the opportunity to interview Sarah and her mom and learned that Sarah is one courageous little girl with a huge heart, a love for animals and a Read more…
Our Families’ Beginnings: Joy’s family: Our son, Samuel, was sick for months before we knew his symptoms had a name. Food Protein Induced Enterocolitis Syndrome is what the allergist confirmed after months of trying to pinpoint it on our own, with just the Pediatrician and Dietitian help. We had been Read more…